Published: October 30, 2020
Sometimes I wonder whether it is me or the chapter getting more out of the involvement at Crohn’s and Colitis Foundation-New England Chapter. Working with others who know the disease all too well, whether they are patients, family members, or caregivers has been truly inspiring. Getting together with other volunteers, live as we used to do, or virtually as we are accustomed to now is like getting together with friends.
My son, Daniel, now 26 and stable, was diagnosed at 19. Seven years ago, I decided to stop stressing over Daniel’s status and begin to focus that energy on what I could for patients. And how I could contribute in a small way to help raise funds to support research for a cure, patient support and education, and new therapeutics. Crohn’s and Colitis focuses their efforts on all of these areas, so it was the perfect place to start.
I have been fortunate enough to be a board member for a few years and participate each year in the Fete of Food and Wine planning as a volunteer. This has been the highlight of the fall as it is such an incredibly well-run event, changing just a little each year to keep it all interesting. This year, changing a lot due to the Pandemic. Most recently, I became more involved in the state legislature and lobbying to modify laws regarding step therapy, also known as “fail first”. I never imagined that my recently acquired Masters in pain, research and public policy would come in so handy. We need patients and families to have strong voices when laws are made that favor insurance company more than patients. I’m happy to add to the voices of patients and caregivers for this truly worthwhile cause.
If you are someone who is thinking about volunteering, please do step in! It will surprise you. It has enriched my life tremendously while I have become more well educated about the disease, a better resource to my son, a better advocate for patients, and a mom now filled with hope instead of despair for the future of patients with IBD.
While my son is doing superbly well, I know others are suffering. I do this for all other sons and daughter out there suffering with IBD. I do this for all the moms and dads who are suffering. And for all the grandfathers and grandmothers. This disease does not discriminate by age. Sadly, the very young are suffering from this disease and we need to find a cure so that no child has to deal with IBD ever again!