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Winter Feast Part 3

Posted on by Charlie

Jennifer Stack

Jennifer Stack

Warm up this winter with these flavorful, nutritious dishes, from bite-sized snacks to hearty meals, served with holiday health in mind!

Jennifer Stack is an associate professor of liberal arts at the Culinary Institute of America (CIA), in Hyde Park, New York, teaching nutrition and food safety to students in the college’s degree programs.  A registered dietitian and a certified diabetes educator, Stack is a 2003 CIA graduate and also holds a Master of Science degree in nutrition from New York University.

Cheese Blintzes with Clementines Poached in Red Wine. Photo by Ben Fink, © 2012 by Ben Fink.
From The Diabetes-Friendly Kitchen: 125 Recipes for Creating Healthy Meals by Jennifer Stack, Registered Dietician, Associate Professor, The Culinary Institute of America, 2012, John Wiley and Sons.
YIELD: Six servings

INGREDIENTS

For the Whole Wheat Crepes
For the Cheese Blintz Filling
For the Red Wine-Tea Poaching Liquid

METHOD

Preheat the oven to 350°F.

For the Whole Wheat Crepes
For the Filling
For the Poaching Liquid

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Posted in Diseases, Featured, Media Center | Comments Off

CVC Close Up: Nicole Reynolds

Posted on by Charlie
Nicole Reynolds
Nicole Reynolds
CVC Senior Finance Manager

 

 

Six years ago, when I first came to CVC, I was looking for a position with a non-profit, having worked for more than a decade in a residential center for women. My work had to be meaningful, and I wanted to team with people who understood the value of service.

My mother and father are largely responsible for instilling the qualities that influence my work at CVC. Mom had great compassion for and connection with people; she was generous and shared with those in need. She would take me along to nursing homes to play an old piano and sing. We shared our home with international students and with missionaries doing really tough work in orphanages around the world. Mom cooked for and spent time with friends who were ill.

Dad taught me how to be interested in people and the world around me. He instilled the value of hard work, discipline and passion for the work. He inspired my imagination and helped me become a problem solver.

Having raised four children has made me a thankful and determined person and has brought joy and humor into my life. It has helped me to be down to earth. One thing I love about young people is that they will tell you the truth as they see it.

I have been described as a free spirit, a communicator, and someone who has a strong work ethic. I can also be stubborn, which means I just won’t quit until the answer is found, or the problem is solved.

In Finance we help our patients by paying the copays for expensive medications. We do the accounting for CVC as a nonprofit and communicate regularly with pharmacies and patients around the country.

Paying claims is an exciting job. It’s energizing, because it is something I can do for another person, something that could lift their burden in some way. That person may as well be my own neighbor, my child, or my grandparent. I work on the patients’ behalf with this in mind each day.

In my spare time, I like to be outside as much as I can. My family enjoys hiking and spending time in the beautiful parks around Richmond. I love classic movies like “On the Waterfront,” and “Boys Town,” with Spencer Tracy and Mickey Rooney, or anything with Bette Davis.

I enjoy talking with our patients. On each call, I find a person with qualities I can admire. It is important to me to make a connection with each person and their story so I am able to appreciate what is special to them. Our patients love life. They are courageous and deeply caring people. We share laughter, sometimes tears, faith and hope.

Many times people want to express their appreciation to CVC. I thank our patients for sharing this part of their journey and for being an inspiration and an encouragement.

If there’s one thing that I want patients to know about CVC, it’s that they can be themselves. They can freely ask any questions they have, because the person who will answer sincerely wants to help.

Posted in Diseases, Featured, Media Center | 3 Comments

Disability Glossary

Posted on by Charlie

CVC Patient Advocate Lauren Patrizio explains important Social Security disability benefit application terms.

The process of applying for Social Security disability benefits can be both arduous and confusing for people who have never been exposed to it before. Just like most professional industries have their own lingo, the Social Security Administration (SSA) uses its own terms that often require explanation. My goal is to provide that explanation in this disability glossary.

Photo: CDC

Photo: CDC

Click on a term to reveal it’s definition.

A
Administrative Law Judge (ALJ):

In most states, if you do not agree with the reconsideration decision the Social Security Administration made on your application for benefits, you may request a hearing before an Administrative Law Judge, a legally experienced official who presides over hearings and administrative appeals of Social Security Administration decisions.

Benefit Application:

You can apply for retirement, disability, Medicare and spouse’s benefits online (socialsecurity.gov), in person (at a Social Security office) or by telephone (800-772-1213). You will be asked to complete a benefit application, which asks detailed questions about work history, medical history, and current treatment.

C
Claimant:

The individual making the claim for disability benefits.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Compassionate Allowance (CAL):

The Social Security Administration released an initiative in which certain extreme conditions are designated for fast-track consideration for disability benefits. This is important because an initial application for benefits generally has a hold-time of six months before a determination is made. Two examples of compassionate allowance conditions are Huntington’s chorea and use of continuous home oxygen. If you have your claim flagged for a CAL condition, you could receive a determination as soon as one month later.

Continuing Disability Review (CDR):

The Social Security Act requires that the SSA periodically update records and review the disability status of beneficiaries and recipients to ensure that you continue to be disabled and thus eligible for disability payments. These reviews (pulled randomly about every seven years) are called Continuing Disability Reviews (CDRs) and apply to those receiving both SSDI as well as SSI. These reviews can be based on either substantial medical improvement or work activity.

D
Date Last Insured (DLI):

First, to clarify, DLI has nothing to do with whether you have health insurance. Instead, it is a term that the Social Security Administration (SSA) uses to determine when your eligibility for Social Security Disability Insurance (SSDI) benefits runs out. To be eligible for SSDI benefits, you must have 20 of the last 40 quarters of work covered. In other words, you must have a currently insured status, which generally runs out five years after you stop working and paying Social Security taxes.

Decision Letter:

An official letter from the Social Security Administration explaining its decision on your disability benefits, and, if benefits are payable, spelling out the amount you will get each month.

Deemed Income:

When the SSA determines the eligibility and amount of payment for an SSI recipient, it also considers the income and resources of people responsible for the recipient’s welfare. This concept is called “deeming.” There are three main situations where income and resources are “deemed”: from an ineligible spouse to an eligible individual; from an ineligible parent(s) to a child; or, from a sponsor to an alien.

Disability Benefits:

Benefits for those who have not yet reached full retirement age, but who have physical or mental limitations that prevent them from doing substantial work for twelve months or longer.

Disability Definition:

“The inability to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months.”

Disability Determination Services (DDS):

When you file an application for Social Security Disability benefits, your case is reviewed by your local Social Security Field Office. If you meet the nonmedical requirements (insured status for SSDI, and below income and resource limits for SSI) for either type of disability benefit, your case is then transferred to this state agency, which works closely with the Social Security Administration to review applications for disability benefits. DDS is the entity that makes the medical determination on your claim.

E
Expedited Reinstatement of Benefits (EXR):

If you had your disability benefits terminated due to work earnings, and then subsequently had to reduce your work below Substantial Gainful Activity (see SGA) or end employment as a result of your impairment, you can get benefits reinstated through this quicker and easier process. EXR is only available if applied for within five years of the initial termination of benefits. While a formal determination is pending, you may be eligible for provisional benefits (that will never be considered an overpayment) for up to six months.

F
Federal Benefit Rate (FBR):

Supplemental Security Income (SSI) is a “need-based” program funded by general tax revenue designed to provide a minimal level of income to those disabled persons in financial need. It is intended to supplement any income individuals already possess, thus the dollar amount received every month can vary substantially for each person. However, the Federal Benefit Rate is the maximum dollar amount that an individual or family can receive in SSI cash benefits from the federal government. States have the option to then supplement the FBR for SSI recipients.

I
Impairment-Related Work Expense (IRWE):

The cost of certain impairment-related items and services required by individuals in order to work are deducted from gross earnings in calculating SGA. The cost of IRWE expenses can be deducted from gross earnings during the initial application process, enabling individuals to meet the SGA requirement. In order for the expense to be deductible it must be related to the work activity and paid for by the recipient.

L
Listing of Impairments:

An official compilation, by the Social Security Administration, of impairments considered severe enough to prevent an individual from doing any substantial gainful activity. These impairments, which can be found at www.ssa.gov, are listed by each major body system.

M
Medicare:

The government health insurance program for individuals 65 and older, as well as some others, including those receiving Social Security disability benefits for two years or more.

R
Re-determination Review:

Since Supplemental Security Income (SSI) benefits are needs based, the Social Security Administration must annually update a recipient’s income, resources, and living arrangement information to insure continued financial eligibility for SSI benefits. These are non-medical reviews.

Representative Payee:

It is the policy of the SSA that every legally competent beneficiary or recipient has the right to manage his or her own cash benefits. However, when there is evidence that an individual is not able to manage or direct the management of benefit payments in their best interests, representative payment may be made. Benefits are then paid to a third party for the use and benefit of the beneficiary.

Request for Reconsideration:

In most states, this is the first step in challenging an adverse decision on an initial application for benefits. It is generally a paper review of the claim by an examiner at DDS.

Residual Functional Capacity (RFC):

This is an individual’s remaining ability to function in the workplace despite limitations from disabling conditions. An RFC is assessed based on medical and other evidence and the physical, mental, and sensory requirements of work.

S
Social Security Administration (SSA):

A United States government agency that administers social insurance programs, including Social Security, Supplemental Security Income and enrollment in Medicare. Previously operating under the Department of Health and Human Services, the SSA has operated as an independent agency since 1994. The headquarters are in Baltimore, and local field offices are in all 50 states and U.S. territories.

Substantial Gainful Activity (SGA):

People are often surprised to hear that they can continue working and apply for and/or receive disability benefits. However, there is a maximum amount that you can make. SGA is defined as the performance of significant physical or mental duties for pay on a sustained basis. In 2014, the SGA limit is $1,070, gross, a month for an individual with a disability other than blindness and $1,800 for statutorily blind individuals. If you are considered to be engaged in SGA or you make above the $1,070 or $1,800 limit, you will be considered technically ineligible for disability benefits.

T
Treating Physician and Treating Physician Data Sheet (TSDS):

A specialized physician or psychologist who treats your for your disabling condition and the form he/she completes regarding your ability to work. The TSDS is arguably the most compelling evidence you can submit to support your claim for benefits.

Trial Work Period (TWP):

The Social Security Administration encourages an individual to work, if possible. Accordingly, individuals receiving Social Security based on disability are entitled to a nine-month TWP, which provides opportunities to test work skills while maintaining full benefit checks. During the TWP, the restriction on substantial gainful activity is not enforced.

U
Unsuccessful Work Attempt (UWA):

If you attempt, but cannot sustain substantial gainful activity (SGA) for more than six months, it will be considered an unsuccessful work attempt, as long as the termination or reduction of hours is due to your impairment or the removal of special conditions. In other words, that period of work over the SGA limit will not be detrimental to your application.

V
Vocational Expert (VE):

Most ALJ’s request the presence of a VE at a hearing. A VE is a government-paid occupational expert who can testify to the type of skill and exertion required to perform your previous job or any other jobs in the national or regional economy to determine if any work is available to you.

 

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Patient Association Profile

Posted on by Charlie
Pattie Tuomey, President, COO, Pulmonary Fibrosis Foundation (PFF)
Patti Tuomey
President, COO, Pulmonary Fibrosis Foundation (PFF)
How long has the Pulmonary Fibrosis Foundation been in existence, and who does the organization serve?

The Pulmonary Fibrosis Foundation was founded in 2000 by two brothers whose sister succumbed to the disease. What began as a local effort to figure out how to help others with pulmonary fibrosis and understand the disease has rapidly grown into a nonprofit organization with national reach.

Over the last four years, we’ve really expanded, both in terms of providing programming for patients, caregivers and their families, and by funding research. Our PFF Care Center Network and PFF Patient Registry support patients and caregivers and aid research that will hopefully one day lead to a cure.

I came to the foundation about four years ago, having served in leadership roles in other nonprofit and philanthropic organizations. It’s a bit bittersweet, because pulmonary fibrosis has directly affected my family.

Our CEO, Dr. Rose, and I felt we could take the organization to the next level. In doing that, we’ve been able to build a team that has diverse strengths, including a new medical team that joined us within the past year.

We serve patients and caregivers, but a big question within our community is, what happens when patients pass away? The PFF is there for families as well. If you’ve experienced this in your family, you ask yourself, ‘Now what?’ What does that look like after someone has passed? So a lot of folks will hold activities both in honor, and in memory of loved ones who have passed from the disease.

A huge part of what we do is getting people involved. Our volunteers hosted nearly 140 events over the past year.

When did you become aware that pulmonary fibrosis was in your family?

My mom actually passed of it. I didn’t realize at first, because she was misdiagnosed. But by the time we found out, it was very quick. It was 10 weeks. Now, it’s six years later, and we’re still trying to sort through her medical records and see what happened.

Unfortunately, misdiagnosis happens frequently. It’s important to identify the disease as quickly as possible so that the right medical and support teams can get into place fast. Research shows that a comprehensive team helps in extraordinary ways, from improving the quality of life to even slowing the progression of the disease.

I was a pretty distracted caregiver. I had a two-year-old and a four-year-old and a dad with Alzheimer’s. I think my mother was trying to keep as much as she could to herself. I was just trying to do everything I could for all of them as well.

I bring this knowledge to the PFF when planning programs to help the overall PF community, such as suggested guidelines for Pulmonary Fibrosis caregivers, so they know they need to take care of themselves in order to help their loved ones. Our doctors often tell people to think about the oxygen mask rule on the plane—first use the mask on yourself, so that you then have the strength to help others. The same can be said for those helping loved ones with PF.

What are some of the biggest challenges for PFF?

It can be challenging to do everything we would like to help support the entire community. Some of the biggest challenges include raising funds for both disease education and research.

The more we can share with the general public and the medical community about the signs of PF, the faster it can be diagnosed. We’re reaching people in a variety of ways, including live webinars and printed publications.

And the more we can fund innovative research, the closer we get to discovering a cure. We’re very proud to have earned top honors from two organizations that serve as charity watchdogs. We earned Charity Navigator’s four-star rating, and we meet all 20 of the Better Business Bureau’s Wise Giving Alliance’s accreditation standards. People know that their donations to PFF are used responsibly.

…it’s important for [newly diagnosed patients] to know that they have a resource, and that’s what we try to be.
What are some of the things you do for PFF? What might a typical or an atypical week be like for you?

As the COO, I wear many hats, like the engagement hat, which I really love, going to see the families and the patients. We try to go out as much as possible to meet folks in person and lend our support.

In addition to administrative oversight, in a typical week, I might attend an educational event, meet with an industry partner, and talk with our medical team. I’m also always working to improve and expand our programming to better serve the PF community.

When you meet with families and patients, what takes place? What do you discuss?

Maybe because of what I’ve gone through personally, I listen. I like to listen a lot to what experiences people have. It’s a comfort to know that you are not alone. I want to know what people need from the foundation—whether it’s support programs or educational materials or awareness bracelets.

What are some of the services that you feel are the most needed among pulmonary fibrosis families and patients?

There are different ways that people can engage with us, based on their availability and preferences. They can call or email through the Patient Communication Center (PCC) at 844-TALKPFF or pcc@pulmonaryfibrosis.org. The PCC is the central information hub for patients, caregivers, and families.

We have support groups, where sometimes patients and families find it’s more comforting or reassuring to share experiences or listen in an in-person environment.

Others may prefer online support groups, and that’s important for people who perhaps can’t get out. Online support groups are for both patients and families.

That is all complemented by our PFF Care Center Network, which provides the highest quality medical care and support services for patients and their families. Those who visit a PFF Care Center Network site have access to a multidisciplinary care team, pulmonary rehabilitation, support groups, and educational materials and programs.

What do you think are some of the most important things for the newly diagnosed and their families to know?

First of all, it’s important for them to know that they have a resource, and that’s what we try to be. We just redesigned our website to be more user-friendly and accessible to patients, caregivers and families. We know that a lot of people, once diagnosed with PF, want more information and oftentimes visit our website to learn more.

We also offer an information kit, which includes our Pulmonary Fibrosis Patient Information Guide, which addresses topics, including defining pulmonary fibrosis, treatment and monitoring, and suggested questions to ask your health care providers. That’s also available online.

What do you think is important emotionally for them to know?

What I’ve learned in this position is that it’s very individualized. People have to know that we’re here to support them, and that we are going to listen to them. We can provide them with resources and knowledge in order to ask their physicians the right questions. They’re not alone.

It’s almost like a one-two punch. You find out that this is happening, and then sometimes you go to tell people what you have been diagnosed with, and people haven’t heard about it.

We’re working to raise awareness—this past September, we presented Global Pulmonary Fibrosis Awareness Month. We really push to get the word out, not only during the month of September, but every day of the year.

This year, one of our PFF Ambassadors, Diane Reichert, created the very successful “Blue It Up” awareness and fundraising campaign that challenged people to dye a streak of their hair blue for Global Pulmonary Fibrosis Awareness Month. The idea was to challenge others to ask, ‘What is pulmonary fibrosis?’ Kids, health care professionals, and friends jumped right in and took part, from as far away as Europe! It was a great way for people to bond globally and share knowledge.

Another important program that we have instituted this year is the PFF Ambassador Program. PFF Ambassadors are a group of caregivers, patients, and health care professionals who share their stories and provide the latest disease information to audiences around the country.

Do you refer patients to clinical trials?

Earlier this year, we surveyed patients and caregivers and found that there is a lack of understanding about what the clinical trial experience is like. So we try to describe what the process looks like.

It’s not for everybody, but we feel that we should be there to provide information. Those who are interested in learning more about clinical trials and how to participate can visit our website at http://bit.ly/PFClinicalTrials.

What else do you think is important for people to know about PFF?

We want people to know that the PFF is there for them—whether they have been newly diagnosed, or are caregivers supporting loved ones, or medical professionals who need additional information for their patients. We partner with the leading experts and organizations in the PF community to provide the best and most comprehensive resources to those who need them most.

PFF Contact Information
Pulmonary Fibrosis Foundation
230 East Ohio Street
Suite 304
Chicago, Illinois 60611
Tel. 888-733-6741
Fax 888-587-9158
info@pulmonaryfibrosis.org
pulmonaryfibrosis.org
PFF Patient Communication Center (PCC)
844-TALK PF
pcc@pulmonaryfibrosis.org

 

Posted in Diseases, Featured, Media Center | 2 Comments

Winter Feast Part 2

Posted on by Charlie
Jennifer Stack

Jennifer Stack

Warm up this winter with these flavorful, nutritious dishes, from bite-sized snacks to hearty meals, served with holiday health in mind!

Jennifer Stack is an associate professor of liberal arts at the Culinary Institute of America (CIA), in Hyde Park, New York, teaching nutrition and food safety to students in the college’s degree programs.  A registered dietitian and a certified diabetes educator, Stack is a 2003 CIA graduate and also holds a Master of Science degree in nutrition from New York University.

Sausage and Barley Stuffed Peppers. Jennifer Stack, Registered Dietician, Associate Professor, The Culinary Institute of America, Hyde Park, New York. Photo by Ben Fink, © 2012 by Ben Fink.

From The Diabetes-Friendly Kitchen: 125 Recipes for Creating Healthy Meals by Jennifer Stack, Registered Dietician, Associate Professor, The Culinary Institute of America, 2012, John Wiley and Sons.
YIELD: Eight servings
INGREDIENTS
METHOD

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Back to Life

Posted on by Charlie

Click here to share your story!

Now thriving at work and in life, Dennis Redman Sr. battled a broken back, the loss of his home in Hurricane Katrina, a massive heart attack that left him clinically dead, unemployment, and cutaneous T-cell lymphoma.

I worked for NASA security for over three years when I stepped in a hole while doing defensive tactics and broke my back from the fall. This was a couple of months before Hurricane Katrina hit, August 29, 2005.

Dennis Redman as a special agent with the Katrina Fraud Unit

Dennis Redman as a special agent with the Katrina Fraud Unit

Katrina devastated our area. We lost our home and lived in a FEMA trailer for 18 months while we were rebuilding. While this was all going on, I had two back surgeries.

Since I was out of work for so long, my employment with NASA was terminated. Physically, I was unable to work because of my back, and eventually we received a small settlement. This got us through for about two years.

I was getting my strength back and felt I was able to go back to work. I really needed to, because the cost of rebuilding right after Katrina skyrocketed.

Before I was able to find another job, I had a massive heart attack. This was on June 21, 2008. Around 7 p.m., my wife, Barbara, was bringing me to the hospital (I refused an ambulance, because I did not think it was too serious), and about five miles before we got to the hospital, my heart attack started.

Of course, I do not remember any of this, but Barbara clued me in later on. She told me that she was doing 100 mph on the interstate when the heart attack started. When she got to the exit leading to the hospital, she said she almost panicked because she had to pass through seven traffic lights. It was a main road in Slidell, Louisiana. Although she was aware that she could go through the lights, she knew it would slow her down.

At this point, Barbara noticed I was not making any more sounds, and she knew that I was dead. God was definitely with us, because all seven lights were green, even the one where she had to make a left to the ER, and nothing was coming the other way.

When she pulled up to the ER and started beeping frantically, they came running and got me out of the car. They knew I was dead at that point. They hurriedly got me inside and started working on me and I was revived for the first time.

Dennis Reman with his wife, Barbara, at the Cub Scout Pack 2 Blue and Gold banquet

Dennis Reman with his wife, Barbara, at the Cub Scout Pack 2 Blue and Gold banquet

Around 7:30 p.m. my cardiologist co-worker happened to be on duty in the ER. I coded again and he took over and shocked me six times. After the sixth time, one of the nurses gave a prayer and I was shocked for the seventh time, and it revived me.

Later on, we asked the doctor why he kept going (I’m glad he did), and he said there was something about me that wanted to live. After recovering, I had to go back in November of the same year and get a pacemaker and a defibrillator. That was another three-month recovery. I wanted to get back into the work force, but found out that I was limited in what I was able to do.

I was fortunate enough to get a job with the state of Mississippi as a special agent with the Katrina Fraud Task Force. I was only with them for one year, 2010, because the federal grant expired.

I was unemployed until February 13, 2014, which happens to be my birthday. I got a job with a security company, working locally, and after three months, I was promoted to lieutenant as a patrol supervisor.

I found out I had cutaneous T-cell lymphoma cancer about one year ago. A year prior to that, I had a rash on certain parts of my body—mainly under my arms. The rash continued to get worse…. with cracking, bleeding, redness and severe itching. It was also painful.

I called my dermatologist to refill the cream that she had prescribed for me when it looked like an ordinary rash. She said I needed to come in, because it has been one year since I was there.

After examining the rash, she said she would have to biopsy it. The biopsy confirmed that I had T-cell lymphoma cancer, and I was then referred to an oncologist.

After he reviewed my reports, the oncologist referred me to a doctor at Tulane Medical Center in New Orleans, who specializes in this type of cancer. She verified that I did have it and started me on chemo pills and UV light treatments.

After a couple of months on the chemo pills, they were not agreeing with me. They made me so weak that I was unable to get up once I was down, so the specialist changed my medicine. I was very frustrated trying to find the right medicine to work for me and it was also frustrating trying to work out affording the medicine.

The doctor’s office contacted Caring Voice Coalition and a young lady told me all about the program. She is my patient advocate and told me not to hesitate to call her if I had any more questions. This was a big relief, because I felt like I was in good hands. I am very grateful for Caring Voice Coalition.

What is important to me about this diagnosis is that it is not life threatening, as long as I keep up with my doctor and I am not afraid to try new meds, if one does not work for me. My caregiver, my wife, Barbara, is very supportive and is there for me in any way she can be. She knows exactly what is going on and what meds I take and keeps me up to date with my doctor visits.

I enjoy doing being involved with the Cub Scouts, going to church, socializing, whether it’s at the senior center of Picayune, or in line at Wal-Mart, and most of all, spending time with my wife and grandkids.

I also volunteer to play Santa Claus at the Head Start Preschool, as long as I am able to, every year. One of my all-time favorite hobbies for the past 40 years or more is collecting and painting miniature soldiers.

We’ve been through a lot in the past nine years. It’s been very difficult a lot of the times, physically, emotionally and financially. After every let down, we always kept the faith and were able to move on.

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Winter Feast Part 1

Posted on by Charlie
Steve McHugh. Photo by David Rangel

Steve McHugh

Warm up this winter with these flavorful, nutritious dishes, from bite-sized snacks to hearty meals, served with holiday health in mind! (From the Winter 2014 issue of Community Magazine)

Steve McHugh has accomplished much in his career—ten years in the culinary epicenter of New Orleans, working as chef de cuisine at August restaurant, and later, as chef de cuisine of Lüke in San Antonio—and most importantly, successfully battling cancer.

At his San Antonio gastropub, Cured, McHugh uses natural ingredients and hands-on, unadulterated cooking to bring nutritious dishes to his menu, as with this recipe for anti-oxidant-rich and vitamin-packed pumpkin and pepper salad.

Chef’s note: Prepare the preserved celery 24 hours in advance.
YIELD: Six servings
For the Pumpkin
INGREDIENTS
*Chef’s Note: Any type of winter squash can be substituted for the pumpkin.
METHOD
For the Goat Cheese Mousse
INGREDIENTS
METHOD
For the Preserved Celery
INGREDIENTS
METHOD
For the Dressing
INGREDIENTS
METHOD
TO PLATE

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Help Others by Sharing Your Story with CVC

Posted on by CVCinfo

Help Others by Sharing Your Story with Caring Voice Coalition

You can inspire others and let them know that they’re not alone when you share your story with the Caring Voice Coalition community. You can share what’s important for new patients, caregivers, and medical professionals to know about living with rare and chronic illness. And you can tell other patients how you came to CVC and what your experience has been.

Posted in About Us, Diseases, Featured | Comments Off

Back to Work – Legal Corner

Posted on by Charlie

CVC explores federal programs that help those with disabilities find employment.

“To thrive in the competitive international marketplace, employers need access to a diverse pool of qualified job seekers. These federal grants expand that pool and show our commitment to creating career pathways and employment opportunities that result in economic self-sufficiency for people with disabilities.”
– Secretary of Labor Thomas E. Perez

On May 27, 2014, the Department of Labor, through Secretary of Labor Thomas E. Perez, announced an additional $15 million in grants to state agencies to develop strategies for increasing participation of people with disabilities in the workforce through the Disability Employment Initiative (DEI). This article will discuss the DEI, along with other workforce programs available to individuals with disabilities.

Disability Employment Initiative

The Disability Employment Initiative (DEI) is a federal program created to improve education, training, and employment opportunities for individuals who are unemployed, underemployed, or receiving Social Security disability benefits. The DEI has three components: cooperative agreements, technical assistance to grantees, and evaluation of the grantees’ activities to measure outcomes.

Workers complete a fuselage framework for a B-17F bomber, 1942. Photo: Andreas Feininger, Library of Congress

Workers complete a fuselage framework for a B-17F bomber, 1942. Photo: Andreas Feininger, Library of Congress

The Department of Labor’s Employment and Training Administration and Office of Disability Employment Policy jointly run the DEI, which focuses on developing programs at the state and local levels by awarding grants to state and local entities. To be eligible for a grant, the state or local entity must participate in the Social Security Administration’s Ticket to Work Program (see below).

Since 2010, the Department of Labor has awarded over $81 million in grants to 26 states through the DEI. Other successes include:

The DEI releases grants through “rounds.” During its next round of funding, the DEI intends to award at least one grant to at least one project focusing on:

For more information about the DEI, see http://dei-ideas.org.

Workforce Recruitment Program

The Workforce Recruitment Program (WRP) is a federal recruitment and referral program connecting college students and recent graduates with disabilities to the workplace. The program assists students from all majors and levels, from college freshman to graduate and law students. Since its inception, over 6,000 students and recent graduates have received either temporary or permanent employment positions through the WRP.

Here’s how it works: during the fall of each year, a WRP recruiter holds an on-campus-interview with potential candidates to assess the candidate’s eligibility. Eligibility criteria include:

If eligible, the WRP assists the student:

If you are a student or recent graduate and interested in signing up for the WRP, contact your WRP campus coordinator during the preceding spring semester. Your campus coordinator will have specific instructions on how to proceed. During the fall, either October or November, you will have a phone interview with a WRP representative. The WRP representative then compiles the information and enters it into a database that federal hiring officials may search.

Private sector employers or students interested in private sector employment can benefit from the WRP by accessing www.askEARN.org.

For more information and helpful resources visit www.dol.gov/odep/wrp/Students.htm

February 12, 2014 Executive Order and Section 14(c) of the Fair Labor Standards Act

Workers, Chrysler Corporation, Detroit Michigan, 1942. Photo: Arthur S. Siegel, Library of Congress.

Workers, Chrysler Corporation, Detroit Michigan, 1942. Photo: Arthur S. Siegel, Library of Congress.

Section 14(c) of the Fair Labor Standards Act allows employers, upon authorization from the Department of Labor, to pay less-than-minimum wages to workers who have disabilities. The justification is that the person’s earning capacity or productivity is impaired by a disability, such as blindness or cognitive impairment. Many advocacy groups argue that this law, which first appeared in the 1938, is antiquated and discriminatory.

On February 12, 2014, President Obama signed an executive order that carves out an exception to Section 14(c) for federal contractors. The order essentially requires federal contractors, including workers with disabilities, be paid at least $10.10 per hour.

This new wage will apply to new contracts and for replacements for contracts with an expiration date of January 1, 2015.

Ticket to Work Program and PASS

The Ticket to Work Program, administered through the Social Security Administration, allows Social Security Disability Insurance or Supplemental Security Income recipients to test whether they are able to return to work without losing their benefits.

The program works by enlisting providers, called Employment Networks (ENs), to offer employment services such as career counseling, vocational rehabilitation, and job placement or training to the enrollee. The EN’s services are free of charge. If you enroll, you will be connected to an EN in your locality, which will assist you with developing an Individual Work Plan (IWP). This plan will help you identify your goals and employment needs. From there, the EN will assist with career counseling, job placement, and ongoing support.

While enrolled in the Ticket to Work Program, your return to work will not trigger a medical review of your claim. Further, your benefits will not stop for a time, depending on how much you are earning.

A similar program specific to Supplemental Security Income recipients, is PASS, or “Plan to Achieve Self-Support.” PASS allows a beneficiary to set aside money for expenses needed to start a business, go back to school, buy equipment and tools, or transportation and uniforms, or any other type of training, items or services needed to reach a work goal.

To set up a PASS, the first step is to decide on a work goal and the items or services necessary to achieve that goal. You can get help with creating a goal by contacting a PASS expert, Employment Networks involved with the Ticket to Work Program (see above), or a local Social Security office. You will then complete a PASS enrollment form (SSA-545), which you will submit to your local Social Security office. The local office will send the PASS form to an SSA employee, who will review your plan to see if the goal is practical, and the listed items are priced reasonably. If changes are needed, the PASS expert will work with you directly. For more information, see www.socialsecurity.gov/disabilityresearch/wi/pass.htm

This article surveyed only a few of the many programs that allow individuals with disabilities to flourish in the workplace. These programs build upon and strengthen each other, such as the DEI bolstering the Ticket to Work Program by requiring all participating agencies to become Employment Networks. With continued participation, collaboration, and investment, these programs will continue to expand the pool of qualified job seekers for the mutual benefit of the employer and employee.

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Defining the New Normal

Posted on by Charlie

This column is the first of a four-part series by Colleen Brunetti, M.Ed., C.H.C., based on Brunetti’s book, Defining The New Normal: A Guide to Becoming More Than Your Diagnosis.

Colleen Brunetti

Colleen Brunetti

Do you remember the day you were handed your diagnosis? For many of us with a major illness, that moment is burned in our minds. I know I remember my own moment of diagnosis clearly. It was January 2, 2008. I can still see myself lying in that hospital bed just after a right heart catheterization. My husband was at my side, and a cardiologist was standing by my bed. He held a clipboard and wrote some words across the top. Then he leaned over and showed it to us. It read: “pulmonary arterial hypertension.” He then proceeded to tell us it was quite serious, that he couldn’t treat me, and that I would be going to a specialist as soon as possible.

I don’t think I felt much of anything in that moment. Shock, I suppose. It took a couple of days for it all to sink in. I remember calling the cardiologist a couple of days later and asking him to go over results with me again. That was when things started to sink in. That is when I began to cry (and his voice cracked too). That is when things really turned upside down.

We all have defining moments in our journey through chronic and critical illness. The moment of diagnosis is one of them. It is that moment, and the days and weeks that follow, that really set the stage for much of our journey to come as well. A major diagnosis is a tipping point. For some, it is finally an answer for mystery symptoms that have been misunderstood or unidentifiable, and that answer can almost be a bit of a relief. For others, it simply comes as a complete shock.

Whatever your reaction, the way you internalize the news, and use that set of feelings to move you forward matters. It matters a lot. Many patients go through a sense of loss, some even experience emotional and perhaps physical trauma. The prevalence of depression among patients with a major diagnosis is not only significant, it is also completely understandable. This whole “life-long patient” thing is a really big deal.

I am almost seven years into my own diagnosis. As I look back on how I first reacted to my illness, I realize it set the stage for how I moved forward throughout the next several months. I was devastated. Feeling scared, depressed, desperate and a little angry rounded out the experience. At first, I let those feelings define me. I cried a lot. I didn’t care for myself very well. I retreated inward, and chose not to show from the outside just how rattled I had become.

This reaction, while completely understandable, was also not very healthy. The process of mourning the loss of your health and the life you thought you had in front of you is a good one to go through (albeit potentially quite painful). I’m not saying we, as patients, shouldn’t spend some time in that process. We should. But there’s a fine line between feeling what you need to feel and falling down a rabbit hole that you don’t climb out of.

Which leads me to my next defining moment—the moment when you choose to start taking radically good care of yourself—mind, body, and soul. I remember that moment really clearly too. We can thrive, not just survive, with a diagnosis. We are way more in control of our journeys than medical literature or a thick chart of test results and doctors’ appointments can define.

So many other pieces come into play when you are defining your journey as a patient. There’s the food we eat—that matters a lot. There’s a spiritual walk—whatever that means for you. There’s a sense of self—built around how we feel about our education, our ability to work (or not), our grasp of how our diagnosis impacts finances.

Defining the New Normal

There’s the support of family and friends—and how we navigate the changes that sometimes come when we have to learn to relate to people in new ways because of our diagnosis. And so much more.

Defining The New Normal: A Guide to Becoming More Than Your Diagnosis, explores all of this, and leads you through exercises to define these moments for yourself. Over the next several months, we will also explore a few of these topics together here in this column. I hope you enjoy the journey!

Defining The New Normal: A Guide to Becoming More Than Your Diagnosis is available in print on amazon.com and on all major digital readers. Visit www.definingthenewnormal.com to learn more.

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CVC Close Up: Sabrina Parmelee

Posted on by Charlie
Sabrina Parmelee, CVC Communications Specialist

I joined CVC in June 2012. I had been working part-time in a hotel as a guest service agent, while recovering from neck surgery. A CVC employee who visited the hotel with his family was so impressed with my service that he referred me to CVC and told me that they were looking for people with big hearts and great personalities.

I had not heard about CVC before, nor did I know what they were all about. Now, having worked here for two years, I can clearly see why passionate people are needed to work in an organization like this.

I have always loved helping people. I’m a giver, and CVC gives to people in need, asking nothing in return. The gratitude I hear in our patients’ voices when they call us helps me to know and feel every day that I am where I belong.

I was raised in a military family. My first language was German, then English, and I also speak some Spanish. My mom is originally from Germany, where our family had the privilege of spending several tours stationed throughout various cities. We were always within a couple of hours from my mom’s side of the family, which allowed us to spend our summer vacations at Grandma’s house.

My mother and grandmother were always a big influence in my life. Words can’t even begin to describe how grateful I am for all the love, support and constant guidance they gave me. The person I am today is a total reflection of these two strong women. Both of them taught me the values of working hard, treating others with love, kindness, and deep respect, and putting the needs of others before my own.

My husband and I share four wonderful grown children and two beautiful grandchildren. We love to spend quality time together with family and friends, working out in the ministry, and traveling, camping, biking and kayaking with our family dog, Sadie. I also enjoy cooking, baking, and writing poetry in my spare time.

I have always believed that a smile is contagious and goes a long way. I try to make patients feel that smile over the phone. If I can bring a little joy to our patients and put a smile on their faces, my day feels complete.

Anything in life is possible. It reminds me of a German expression that my grandmother used to say: ‘Wo ein Wille ist, ist auch ein Weg.’ It means, ‘Where there’s a will, there’s a way.’

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Shop at AmazonSmile & Amazon Donates to CVC

Posted on by CVCinfo

Shop on AmazonSmile and the AmazonSmile Foundation will donate 0.5% of the price of eligible purchases to CVC.Now, when you shop on AmazonSmile, you can donate 0.5% of the price of your eligible purchases to benefit the programs of Caring Voice Coalition. Caring Voice Coalition is dedicated to improving the lives of patients with chronic and rare diseases by offering services that provide financial, emotional and educational support.

AmazonSmile is a website operated by Amazon that lets customers enjoy the same selection of products, prices and shopping features as on Amazon.com. But when customers shop on AmazonSmile (smile.amazon.com), the AmazonSmile Foundation will donate 0.5% of the price of eligible purchases to the charitable organizations selected by customers.

To select Caring Voice Coalition as your AmazonSmile charitable organization, visit the following website http://smile.amazon.com/ch/26-0058446.

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Healthy Mix: Nutritious Recipes (Part 2)

Posted on by Charlie

Missed Part 1? Click here to read it!

Health-minded superstar chefs and an award-winning dietician have created these delicious, nutritious recipes that suit a variety of patient and caregiver needs. From low-sodium, high-protein meals to low-fat, vitamin-rich dishes that can be made quickly in large portions and frozen for future use, these recipes are flavorful, fabulous and satisfying!

Turkey and Sweet Potato Shepherd’s Pie *
Jennifer Stack, Registered Dietician, Associate Professor, The Culinary Institute of America, Hyde Park, New York
These individual casseroles freeze well and reheat easily for quick, low-sodium and low-fat comfort food all year round.
Turkey and sweet potato shepherd's pie. Photo by Ben Fink, © 2012 Ben Fink.

Turkey and sweet potato shepherd’s pie. Photo by Ben Fink, © 2012 Ben Fink.
YIELD: Six servings
Ingredients
Method
Halibut with Vegetables *
Jennifer Stack, Registered Dietician, Associate Professor, The Culinary Institute of America, Hyde Park, New York
Fresh herbs enhance the flavors of this quick, high-protein, low-fat and low-sodium dish.
Halibut with vegetables. Photo by Ben Fink © 2012 Ben Fink.

Halibut with vegetables. Photo by Ben Fink © 2012 Ben Fink.
YIELD: Four servings
Ingredients
Method
Chocolate Cereal Crumbles *
Jennifer Stack, Registered Dietician, Associate Professor, The Culinary Institute of America, Hyde Park, New York
These quick treats can be made with any high-protein, high-fiber cereal.
Cocolate cereal crumbles. Photo by Ben Fink © 2012 Ben Fink.

Cocolate cereal crumbles. Photo by Ben Fink © 2012 Ben Fink.
YIELD: Four servings
Ingredients
Method
*From The Diabetes-Friendly Kitchen: 125 Recipes for Creating Healthy Meals by Jennifer Stack, Registered Dietician, Associate Professor, The Culinary Institute of America, 2012, John Wiley and Sons
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Accessible City – Philadelphia

Posted on by Charlie

Packed with cultural, historic, and culinary attractions, 332-year-old Philadelphia, Pennsylvania, continues to make strides in accessibility for visitors and residents. Consistently ranked one of the country’s most walkable cities, curb cuts and colorful, compact neighborhoods encourage navigation by wheelchair and scooter, while leafy parks provide shaded spots for resting.

Eva Leonard highlights some of Philadelphia’s top accessible attractions, hotels, and restaurants, as well as those in the charming, historic towns of the bordering Pennsylvania countryside.

Philadelphia skyline. Photo by M. Edlow for Visit Philadelphia™ GPTMC

Philadelphia skyline. Photo by M. Edlow for Visit Philadelphia™ GPTMC
GETTING THERE AND AROUND

Philadelphia is served by Philadelphia International Airport, about seven miles from downtown, and Wilmington-Philadelphia Regional Airport, approximately 30 miles away, in New Castle, Delaware.

Philadelphia International Airport offers brochures for passengers with disabilities and an Airport Autism Access Program. For more information, go to bit.ly/PhiladelphiaBrochure

Wilmington-Philadelphia Regional Airport’s ground-level parking near the terminal entrance is currently free, although fees will charged as parking facilities develop. For more information, go to bit.ly/WilmingtonAir

Subway, Bus and Rail

Southeastern Pennsylvania Transportation Authority, SEPTA, serves Bucks, Chester, Delaware, Montgomery, and Philadelphia counties. All SEPTA buses and more than 100 SEPTA rail stations are accessible. SEPTA’s accessible Airport Line links Philadelphia’s Center City to Philadelphia International Airport and stops at all major terminals. For more information, go to www.septa.org/access

Reduced SEPTA fares are available for passengers with disabilities. For more information, go to bit.ly/SeptaDiscount

Amtrak serves two Philadelphia stations. 30th Street Station has a wheelchair lift, an accessible platform, and an accessible waiting room. North Philadelphia Station, however, does not have an elevator, a wheelchair lift, or an accessible platform. For more information, go to bit.ly/AmtrakAccessible

With 20 stops in Center City, the PHLASH Visitor Bus is an accessible, inexpensive way to travel Philadelphia’s downtown loop of historic and cultural sites. A single ride pass is $2, and an all-day pass is $5. For more information, go to bit.ly/PhlashBus

PARKING

Those with handicapped or disabled license plates or placards are allowed to use the city’s metered street parking for an additional 60 minutes beyond the maximum time limit, at no additional charge. Metered parking in downtown Philadelphia is $2 an hour.

Independence Visitor Center (See Attractions below) is the official visitor center for Philadelphia, Bucks, Chester, Delaware and Montgomery counties. The Independence Visitor Center underground parking garage, Autopark at Independence Mall, at 41 North 6th Street between Arch and Market Streets, costs $18 for 24 hours. (For accessible vans, note that vehicle height clearance is 6’6”.) For parking lot and garage deals, go to www.visitphilly.com/parkingdeals

Taxis

Although there are currently only seven wheelchair accessible taxis in the city, the Philadelphia Parking Authority is to add 45 more by the end of 2014, with an additional 105 to be added over the next seven years. Freedom Taxi provides wheelchair-accessible taxicabs in Philadelphia. Call 215-222-9999 or go to www.freedomtaxi.com/about-us

Attractions

Independence Visitor Center
Independence National Historical Park
1 N. Independence Mall West
(6th and Market Streets)
800-537-7676
Independence National Historical Park includes the Independence Visitor Center, the Liberty Bell Center, Independence Hall, Declaration House, Congress Museum, Benjamin Franklin Museum, and Portrait Gallery in the Second Bank. The Independence Visitor Center offers free wheelchair rentals, assisted listening devices, and sign language interpreters upon request. For more information, go to bit.ly/IndependenceCenter or
bit.ly/NationalParkMobility

Benjamin Franklin Museum. Photo by R. Kennedy for Visit Philadelphia™ GPTMC

Benjamin Franklin Museum. Photo by R. Kennedy for Visit Philadelphia™ GPTMC

Benjamin Franklin Museum
317 Chestnut Street
215-965-2305
This interactive museum in the historic district, reopened last year, includes Ben Franklin artifacts and inventions, and interactive audio and video exhibitions about Franklin’s life. It also features a “ghost house”—a steel outline of the structure that was Franklin’s home, on the spot where the house once stood.

The delightful Shane Confectionery candy shop and Franklin Fountain soda fountain (see Food and Drink below) are just a few blocks away.

Philadelphia Museum of Art
2600 Benjamin Franklin Parkway
215-763-8100
www.philamuseum.org/accessibility
Philadelphia’s best-known art museum, with more than 200 galleries, has a ramp and elevators at the main, Western entrance. Wheelchairs are available in three sizes, free of charge, as are adjustable-height canes with rubber tips.

All of the museum’s sites are accessible and linked via a free, accessible museum shuttle bus. Podcasts, apps, and audio tours are also available, as are adapted guided tours by prearrangement for individuals or groups with various disabilities.

Arts Events

The arts calendar found on www.art-reach.org lists accessible events (music, dance, opera, theater) that are open to the public, and community affairs hosted by Art-Reach partners.

FOOD AND DRINK

Independence Beer Garden
100 S. Independence Mall West
215-922-7100
www.phlbeergarden.com
This new, 20,000-square-foot beer garden overlooking the Liberty Bell and Independence National Historic Park serves 40 types of craft beers and an all-day menu of casual comfort food, as well as healthier options.

Reading Terminal Market. Photo by J. Smith for Visit Philadelphia™ GPTMC

Reading Terminal Market. Photo by J. Smith for Visit Philadelphia™ GPTMC

Reading Terminal Market
51 N. 12th Street
215-922-2317
www.readingterminalmarket.org
This indoor food market, packed with vendors of all stripes, first opened in 1892. Vendors, including bakers and local Amish farmers, sell cheeses, fresh produce, seafood, meats, candies, desserts, cheese steaks, pretzels, and much more. Popular restaurants include an oyster bar and a diner, and purveyors of Greek, Italian, Asian, Middle Eastern, and Cajun fare do a brisk business. For gluten-free and vegan options with Indian-Pakistani flair, check out Nanee’s Kitchen.

Reading Terminal Market can be crowded, especially at lunchtime during the week, but it is wheelchair accessible and well worth a visit. Weekends can be easier to navigate. Parking is $4 for two hours at two garages, with $10 minimum purchase and merchant validation. See the Reading Terminal website above for parking details.

Shane Confectionery. Photo by G. Widman for Visit Philadelphia™ GPTMC

Shane Confectionery. Photo by G. Widman for Visit Philadelphia™ GPTMC

Shane Confectionery
110 Market Street
215-922-1048.
www.shanecandies.com
America’s oldest candy store, Shane Candies, was established in 1911. The staff dresses in turn-of-the-last-century garb to sell sweets, including classic homemade and imported candies, in Shane’s original building in the Old City, near many historic sites.

Franklin Fountain
116 Market Street
215-627-1899
www.franklinfountain.com
On the same block as Shane Confectionery, Franklin Fountain offers an updated menu in an old-fashioned soda fountain setting. Customers choose from inventive treats like “The Lightning Rod,” a sundae of dark chocolate brownie pieces, coffee ice cream, whipped cream, espresso, chocolate-covered espresso beans, white chocolate shavings, and a salty pretzel rod. (Sundaes with gluten-free brownies, and vegan and dairy-free milkshakes are available.) Franklin Fountain’s accessible entrance on its Letitia Street side is by a prized Old City parking spot that is sometimes available.

Granite Hill Restaurant
Philadelphia Museum of Art
2601 Benjamin Franklin Parkway
215-684-7990
www.philamuseum.org/dining
Philadelphia Museum of Art’s Granite Hill restaurant, on the ground floor of the museum’s main building, features a seasonal, French-inspired menu and serves lunch, brunch and dinner.

Hotels

Radisson Blu Warwick Hotel
220 S. 17th Street
215-735-6000
www.radissonblu.com/hotel-philadelphia
In the center of Philadelphia, near Rittenhouse Square, Radisson Blu Warwick Hotel has an entrance ramp, a large, comfortable lobby and the accessible first-floor Tavern 17 restaurant. Accessible guest rooms include those with roll-in showers, accessible controls, bathroom grab bars, and a tub transfer seat. Tavern 17 features gluten-free options, plus a canine cuisine menu.

The Philadelphia Airport Marriott Hotel
1 Arrivals Road, Terminal B
Philadelphia, Pennsylvania
215-492-9000
bit.ly/PhiladelphiaMarriott
The Philadelphia Airport Marriott Hotel features 20 ADA-compliant rooms and is connected to the airport by a sky bridge. The hotel’s Aviation Grill restaurant is accessible, as are the main entrance, registration desk, meeting spaces, routes to accessible guest rooms and entrances to fitness and business centers.

QUICK TRIPS FROM PHILADELPHIA
Towns of the Philadelphia Countryside

The Philadelphia countryside, including Bucks, Chester, Delaware, and Montgomery Counties, all within 50 miles of Center City, is peppered with charming, historic towns. Attractions include nature trails, B&Bs, restaurants, cafes, wineries, antique shops, museums, galleries, markets, theme parks, and much more.

Forty-two miles from Philadelphia, Bucks County, including the towns of New Hope, Doylestown, Langhorne, Holicong, Bristol, Lahaska, and Perkasie, is best reached by car, with New Hope an ideal base for exploring the area.

New Hope Visitors Center
1 West Mechanic Street
New Hope, Pennsylvania
215-862-5030
www.newhopevisitorscenter.org
The accessible visitor center for the historic river town of New Hope in Bucks County is a good starting point for exploration. Built in 1839, the center served as New Hope’s first town hall, school, and jail and has recently been remodeled, with an outdoor garden area.

Hotels & B&Bs

The majority of Bucks County’s major hotels, including the three full-service properties (Crowne Plaza Philadelphia Bucks County Hotel, Radisson Hotel Philadelphia Northeast, Sheraton Bucks County Hotel) and other select-service properties like the Courtyard by Marriott Langhorne and SpringHill Suites Langhorne (both near Sesame Place), are accessible.

Accessible Bucks County B&Bs include:

Golden Plough Inn
Peddler’s Village
Routes 202 & 263
Lahaska, Pennsylvania
(Use 2400 Street Road, New Hope, PA 18938 for GPS devices.)
215-794-4000
The newly-renovated Golden Plough Inn, in 18th-century-style shopping town Peddler’s Village, has four accessible rooms. Peddler’s Village features 65 specialty shops and restaurants.

Inn at Barley Sheaf
5281 York Road
Holicong, Pennsylvania
215-794-5104
www.barleysheaf.com
The Inn at Barley Sheaf is a country inn in an old farmhouse, with first-level entrances to the manor house, cottage and barn, as well as wheelchair accessible rooms. Be sure to request an accessible room when booking, as several of the suites are located upstairs or downstairs. The Inn also offers an adjoining full-service restaurant.

ATTRACTIONS

James A. Michener Art Museum
138 S. Pine Street
Doylestown, Pennsylvania
215-340-9800
www.michenermuseum.org
At the Michener Art Museum, spotlighting regional art and culture, all galleries and public spaces are wheelchair accessible, and service animals are welcome. See the museum’s accessibility brochure at bit.ly/MichenerBrochure for more details.

Mercer Museum, Doylestown. Photo by Anthony Sinagoga Photography

Mercer Museum, Doylestown. Photo by Anthony Sinagoga Photography

Mercer Museum and Fonthill Castle
84 S. Pine Street (Mercer Museum)
East Court Street & Route 313 (Fonthill Castle)
Doylestown, Pennsylvania
215-345-0210 & 215-348-9461
www.mercermuseum.org
The Mercer Museum and Fonthill Castle house a collection of nearly 40,000 pre-industrial era handmade items, ranging from a stage coach to folk art. The original Mercer Museum is partially accessible by elevator, and the new wing is fully accessible. Fonthill Castle has limited accessibility, but ground floor tours can be arranged.

Silver Lake Nature Center
1306 Bath Road
Bristol, Pennsylvania
215-785-1777
www.silverlakenaturecenter.org
Silver Lake Nature Center offers a completely accessible trail specifically designed for wheelchairs, with a ramp to the platform area overlooking the lake.

Sesame Place
100 Sesame Road
Langhorne, Pennsylvania
215-752-7070
bit.ly/SesameGuide
Children’s theme park Sesame Place’s website has an extensive accessibility guide. Highlights include a ride accessibility program, sign language interpretation, wheelchair rental, allergen-friendly options and more.

Bucks County Children’s Museum
500 Union Square Drive
New Hope, Pennsylvania
215-693-1290
http://buckskids.org
The Bucks County Children’s Museum features an “Exploration For All Program Guide” to help children with autism or other disabilities prepare for their visit. For more information, go to bit.ly/BucksGuide

Pearl S. Buck House
520 Dublin Road
Perkasie, Pennsylvania
215-249-0100
www.pearlsbuck.org
The Pearl S. Buck House and Historic Site, once home to the famed writer and humanitarian, offers a guide on its website to its accessible areas, as well as measurements for guests using walking aids. For those who can’t take the full tour of the house, there is an option to watch a video of the tour. For more information, go to bit.ly/PearlBuckAccessibility

(Left) Bucks County Children’s Museum. Photo courtesy of Bucks County Children’s Museum. (Right) Pearl S. Buck House. Photo by Aaron Mitchell Photography.

(Left) Bucks County Children’s Museum. Photo courtesy of Bucks County Children’s Museum. (Right) Pearl S. Buck House. Photo by Aaron Mitchell Photography.
Food and Drink

The Waterwheel Restaurant of Doylestown
4424 Old Easton Road
Doylestown, Pennsylvania
215-345-9544
www.thewaterwheelrestaurant.com
This restaurant features modern Continental fare within a former gristmill built in the early 1700s. The first floor, featuring the main banquet and dining facilities, is wheelchair accessible. This restaurant is open for dinner only, and reservations are recommended.

Nikolas at the Logan Inn
10 W. Ferry Street
New Hope, Pennsylvania
215-862-2300
www.nikolasnewhope.com
Nikolas offers a variety of fresh Mediterranean dishes served in one of the area’s oldest continuously operated inns. Although the inn itself is not wheelchair accessible, the restaurant is.

Posted in Diseases, Featured, Media Center | 1 Comment

Healthy Mix: Nutritious Recipes (Part 1)

Posted on by Charlie

Health-minded superstar chefs and an award-winning dietician have created these delicious, nutritious recipes that suit a variety of patient and caregiver needs. From low-sodium, high-protein meals to low-fat, vitamin-rich dishes that can be made quickly in large portions and frozen for future use, these recipes are flavorful, fabulous and satisfying!

Yellow Tomato Gazpacho with Crab Garnish
Jeff Tunks, Executive Chef/Co-proprietor, Ceiba, Washington, D.C.
Fresh, nutritious ingredients make this gazpacho zesty, low-fat and refreshing.
Yellow Tomato Gazpacho with Crab Garnish. Photo courtesy of Ceiba.

Yellow Tomato Gazpacho with Crab Garnish. Photo courtesy of Ceiba.
YIELD: Four servings
Ingredients
Method
Ingredients for the Garnish
Method
Chilled Pea Soup
John Ondo, Chef/Owner, Lana, Charleston, South Carolina
Nutritious and high-fiber, this soup can easily be made in large quantities to be frozen and stored for future use.
Chilled Pea Soup. Photo by Helene Dujardin.

Chilled Pea Soup. Photo by Helene Dujardin.
YIELD: Four to six servings
Ingredients
For serving crème fraîche [optional]
Method
Beef Braised in Beer and Onions
From The Diabetes-Friendly Kitchen: 125 Recipes for Creating Healthy Meals by Jennifer Stack, Registered Dietician, Associate Professor, The Culinary Institute of America, 2012, John Wiley and Sons
Jennifer Stack, Registered Dietician, Associate Professor, The Culinary Institute of America, Hyde Park, New York
This flavorful, filling meal is not loaded with fat or salt, but has the succulence of stew.
Beef Braised in Beer and Onions.

Beef Braised in Beer and Onions. Photo by Ben Fink. © 2012 by Ben Fink.
YIELD: Eight servings
Ingredients
Method
Note:

Stay tuned for Part 2 coming next week, featuring 4 new recipes!

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