Would you like to share your story and how you came to Caring Voice Coalition with others who can learn from your experiences? Continue reading →Posted in About Us, Featured, Media Center | Tagged Caring Voice Coalition, CVC, Share Your Story, Support | Leave a comment April 8, 2013
Rino Aldrighetti was hired as the first part-time professional staff member of the Pulmonary Hypertension Association. In the years since, he’s assumed the title of President of the organization, enhanced PHA’s scope, built a full-time staff, and advocated tirelessly to increase awareness about pulmonary hypertension. Here, Community talks to Rino about where PHA has been, and where it’s going.
Describe the journey in becoming President of PHA.
In 1998, seven years after PHA’s founding, the organization’s volunteer leadership decided to build a staff. Their first step was to advertise for a part-time executive director. They put an ad in the Chronicle of Philanthropy, running it once.
At the time they were doing this, I was a non-profit consultant. I had just finished a five-year project for one of my larger clients and was getting ready to do what I always did when I was preparing to think through a new direction, begin a three-day retreat. The day before I was to begin, I picked up the Chronicle of Philanthropy and saw a brief two-line ad: “Small rare disease association looking for part-time executive director”.
I responded and was invited to meet with an extraordinary person, Bonnie Dukart, who was PHA’s president. Bonnie, who had been diagnosed with PH shortly after graduating from college, explained to me that the goal was to bring on a person who could increase PHA’s budget so that the organization could do more. Following that meeting, I had the opportunity to meet the board and quickly became aware that I was in the presence of heroes.
I soon accepted the board’s offer and became PHA’s first (part-time) professional staff person in 1999. By 2001, we had increased PHA’s income from $132,000 to $1.1 million and built a small part-time staff. The board then invited me to lead a new full-time staff. The work has always been a privilege.
What are some of the challenges you face when trying to increase awareness or support a rare disease like pulmonary hypertension?
Our greatest challenge in raising awareness about PH is our relatively small numbers. A rare disease in the U.S. is defined as one with 200,000 or fewer patients. PH has 20,000 to 30,000 diagnosed patients.
Given that reality, each person’s decision to make a difference is of enormous importance. At PHA, our mantra is that any person whose life is touched by PH has the right to fight back as much or as little as health and interest allow. Over and over again we have seen what the ability to influence positive change means in people’s lives. We may have 30,000 patients living with this disease, but each has family members and friends, neighbors and medical professionals who care and are ready to help. Harnessing that energy with a strong community is what makes a real difference.
What are some of your goals for PHA for 2013?
In this economic and political environment, organizations that cannot adapt will ultimately decline. At PHA, we have been working hard over the past year to introduce new ways to support our research and patient-serving programs. In December, we opened PHA’s first three chapters – in New York, Chicago and San Francisco. This is a pilot for us to build a professional events structure that will develop a larger population of supporters for our core programming in communities around the country. If we are successful in our first year, we will implement a five-year program to expand the network. It’s an ambitious effort to not only assure our sustainability, but to make sure that our ability to serve the needs of our community is not limited by funding restrictions.
PHA’s early diagnosis program, Sometimes It’s PH Campaign, was launched at our 2012 International Conference and has generated early excitement in the U.S. and other nations. It came about following research indicating that despite all the increased visibility for PH during the past 20 years, the time from onset of symptoms to point of diagnosis has not reduced. This may not have been a problem two decades ago when there were no treatments; however, today with nine treatments and more on the way, getting patients diagnosed so that they can take advantage of these treatments is hugely important.
Why should a PH patient join PHA?
PHA is more than an organization. It’s a community, a place where people understand and help each other get through the challenges of this difficult disease. The strength of the community has value for the individuals who choose to join. It also has value for the whole, for all who live with the disease through our collective ability to develop public awareness, drive advocacy and sustain helping networks. These are things we can only do together and that will create opportunities for better tomorrows for everyone.Posted in Diseases, Featured, Media Center | Tagged PHA, Pulmonary Hypertension, Rino Aldrighetti | Leave a comment January 31, 2013
This year is going to be a big one for CVC. In this video, our Director of Finance, Rebecca App, explains where CVC has been, where we’re going, and how we couldn’t have done any of it without the continued support of our patients and partners.About Us, Featured, Media Center | Leave a comment January 10, 2013
Managing the wide array of medications an older loved one takes is one of many family caregivers’ primary responsibilities. But this can be a complicated task – and mistakes can happen when you least expect them.
Have you made one of the three most common medication mistakes?
Medication Mistake #1: Making Pills Easier to Swallow
Check with the pharmacist before you change a pill in any way. Certain medications given once a day, for example, are designed to have a timed release that occurs gradually throughout the day. Crushing them or cutting them in half could alter the way the drug is released, resulting in the person getting too much at once or none at all. If swallowing pills is a problem, ask the pharmacist if the medication can be provided in a smaller tablet or in a liquid form.
Medication Mistake #2: Filling a Pill Organizer Incorrectly
A 2011 study by Northwestern University’s Feinberg School of Medicine found that 60 percent of caregivers made errors when sorting medications into pillboxes, which speaks to just how complicated sorting multiple drugs with various timings for delivery can be.
Consider asking the pharmacist if he or she will sort the pills for you when prescriptions are filled. Some will do this routinely, while others will demonstrate it a few times to show you the best way to get started.
Medication Mistake #3: Storing Medications in “Typical” Places
Many people routinely store their medications in the bathroom medicine cabinet, but temperature changes and moisture levels can alter the medication once it is opened. Be sure to read the packaging on prescription medications for storage instructions.
For more information on managing your loved one’s medications, visit www.liftcaregiving.com.
Katie Gilstrap is cofounder of Lift Caregiving.Posted in Caregivers, Featured, Media Center | Tagged Caring Voice Coalition, CVC | Leave a comment January 3, 2013
Often accompanied with a rare disease is an overbearing sense of isolation. Our patients are often left thinking that they are alone in their fight. But as many of our active patients will attest, social networking can help curb your solitude. By logging onto our Facebook and Twitter sites, you can interact with others who have your disease. On our Vimeo site, you may find solace in one of our patient’s stories. There are others out there like you, and we’re here to bring you together.
Posted in Featured, Media Center, Uncategorized | Tagged Caring Voice Coalition, CVC, Facebook, Social Media, Twitter, vimeo | Leave a comment ← Previous post