Category Archives: About Us
← Previous postCVC one of the best nonprofits to work for 2 years in a row
May 6, 2013
Several months ago Caring Voice Coalition participated in a survey rating the best nonprofits to work for. It is with pride and pleasure that we would like to announce that CVC has been ranked in the top 50 for the 2nd year in a row.
This year CVC ranked #33 out of 50 overall organizations and #18 in the Medium Organization category. The NonProfit Times, who conducted the survey, included an article listing the results of the survey (click here to view the full article).
Posted in About Us, Diseases, Featured | Leave a commentTalking to Children About Illness
April 23, 2013Explain the disease.
Children may not understand disease names or their associated symptoms, and the word “disease” may make them worry that it is something they can catch.
Try not to go overboard, but address common fears.
Carefully explain that your loved one isn’t acting this way because she doesn’t love the child anymore. It is just that he or she has trouble doing some things now.
Even if your child doesn’t ask, make sure he or she knows that the illness is not contagious.
Emphasize that the disease has nothing to do with germs and cannot be “caught” by being near a loved one.
This information was provided courtesy of Lift Caregiving.
Posted in About Us, Diseases, Featured | Tagged children, disease, illness, lift caregiving | Leave a comment
Purple Day – The Global Day of Epilepsy Awareness
March 26, 2013
Today marks the fifth annual Purple Day, a grassroots campaign aimed at bringing global awareness to epilepsy. Purple Day was born from the motivation of an epileptic young woman named Cassidy Megan. In 2008, Cassidy started Purple Day “in an effort to dispel myths and inform those with seizures that they are not alone.”
Since that time, Purple Day has amassed an impressive social media following, as well as various business and individual partners, all helping spread awareness about a misunderstood condition.
To learn more abut Cassidy and her Purple Day campaign, you can visit www.purpleday.org, or find them on Facebook at PURPLE DAY for EPILEPSY.
Here are a handful of quick facts about epilepsy, featured on the organization’s website:
- There are approximately 65 million people around the world living with epilepsy
- Approximately 1 in 26 people will develop epilepsy at some point in their lifetime
- There are more than 300,000 Canadians living with epilepsy
- There are approximately 2.2 million Americans living with epilepsy
- Epilepsy is NOT contagious. Epilepsy is NOT a disease. Epilepsy is NOT a psychological disorder
- There is currently no “cure” for epilepsy. However, for 10-15 percent of people with epilepsy, the surgical removal of the seizure focus – the part of brain where the person’s seizures start – can eliminate all seizure activity. For more than half of people with epilepsy, medication will control their seizures. Additionally, some children will outgrow their epilepsy and some adults may have a spontaneous remission
- Not everyone can identify specific events or circumstances that affect seizures, but some are able to recognize definite seizure triggers. Some common triggers include:
–Forgetting to take prescribed seizure medication
–Lack of sleep
–Missing meals
–Stress, excitement, emotional upset
–Menstrual cycle / hormonal changes
–Illness or fever
–Low seizure medication levels
–Medications other than prescribed seizure medication
–Flickering lights of computers, television, videos, etc., and sometimes even bright sunlight
–Excessive alcohol consumption and subsequent withdrawal
To learn more about CVC-supported diseases: Complex Partial Seizures and Infantile Spasms
Posted in About Us, Featured | Tagged Epilepsy, purple | Leave a commentMargaret’s Story
February 22, 2013My story began back in 1989. I had just gone through a nasty divorce, changed working hours, and moved to another town with my three children. I had discovered a weird spot on the back of my left thigh in the Spring but I just couldn’t handle having it looked at – there was simply too much going on.
In August of 1989, I went to a surgeon and had the spot removed. Ten days later I returned to have the stitches removed and was told I needed further surgery, as the “spot” was a melanoma. I moved on and had the wide excision with a skin graft.
In 2006, I became ill with the flu. I developed a cough from this that never went away. I went to my doctor and each time was told my lungs were clear. There was no answer for this cough.
I’m a nurse and had always worked 32-40 hours a week. At this time, I was working 32.
In early spring 2007, I discovered an enlarged lymph node in my left groin. There was a lot going on in my life, as usual, and I did nothing.
In July 2007, I went to my doctor who sent me to a surgeon. The node was and came back malignant melanoma. Eighteen years after my first onset.
In mid August, I woke up and noticed my cough had changed to a dry cough and my shortness of had breath had increased. I decided to stop in the emergency room before work, knowing that something wasn’t right.
After a chest x-ray, I was told I had a blood clot. They did a CT scan and I was prepped for the Special Procedure room. I had what is called a saddle pulmonary embolism. One pulmonary artery was almost completely blocked, while the other was 60 percent blocked.
On my third day at the hospital, I went back to the Special Procedures room and had a filter placed in my Inferior Vena Cava to prevent any more clots passing to my vital organs.
While I was in the hospital, my Oncologist came to see me and told me I had Factor Five Leiden and would need to be on blood thinners for life. My younger sister had a clot in her leg back in 2000 and was told at that time she had Factor Five Leiden. Because of the genetic predisposition to clots, I was told then that I should be tested. Well, I told myself I was too busy. I should’ve known better.
In September, I saw a pulmonologist and a treatment plan was discussed, but I had to recover from my clots first. I returned on a later date and met with another doctor. We discussed my surgery to be done in late September.
My surgery was a lymphadenectomy. They removed 17 more lymph nodes and a muscle re-location. When the surgery was done, I was sent home with two drains hanging from my upper thigh, which I was instructed to empty three or four times a day and keep a record of my temperature.
Four years and multiple pulmonary function tests later, and I was still coughing and becoming increasingly short of breath. So I decided to seek a second opinion and scheduled an appointment with a specialist in Boston.
My biggest fear was that I had Pulmonary Fibrosis (PF) or Idiopathic Pulmonary Fibrosis. I had lost my Mother in 1982 to what was referred to as PF, and my younger sister to IPF in 2009. Could this be familial Pulmonary Fibrosis? I decided to have the lung biopsies my new doctor suggested. The procedure went very well and I went home the next day with the visiting nurses to assist me.
So, I have had an interesting life these past seven years. Many health complications, medications, surgeries, and other various scares. But I have a great support system, and great family and friends who care for me. I only hope my future will allow me to sell my home and move to Florida to be closer to family.
Thank you for reading my story.
Posted in About Us, Featured | Leave a comment2013 will be a big year for Caring Voice Coalition, Inc.
January 31, 2013This 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.
Rebecca App, Director of Finance from Caring Voice Coalition on Vimeo.
Posted in About Us, Featured, Media Center | Leave a comment ← Previous post
