In January, I was honored and humbled to be voted Chairman of the Board for Connecticut Advocates for Parkinson’s (CAP). I am replacing Steven DeWitte, CAP’s founder. Steve is a visionary and nationally recognized patient advocate. He successfully led CAP for over ten (10) years and remains part of the Board. I want to personally thank Steve for his friendship and the tremendous time and energy he has given to the cause.
This inaugural newsletter is an effort to improve communication with our support groups throughout the State and the Connecticut Parkinson’s community as a whole. Connecticut Advocates for Parkinson’s has always been about “our members”. We exist because of, and for, you!
For those of you unfamiliar with CAP, we are a non-profit (501-c3) that offers positive support for People with Parkinson’s (PWP’s). Our mission is to expand outreach initiatives, promote patient group collaboration, offer wellness and educational opportunities and clinical trial participation. We strive to build a framework of cooperation and collaboration with the research, healthcare, and Pharmaceutical organizations. All too often, the people with Parkinson’s lack a voice with the very researchers who are trying to help them.
We had a very busy, eventful year in 2017 to date. Reflecting on the aforementioned mission, I am proud of our accomplishments which include:
- Running four (4) Support Groups in Connecticut with over one hundred and thirty (130) active members.
- CAP members participated in two (2) Yale clinical trials. Both trials were exclusively enrolled by CAP members.
- As part of the Make a Difference Parkinson's Alliance (MADPA), hosted the 4th annual Summer Parkinson's Symposium at The University of Hartford.
- Coordinated the Branford Road Race Healthy Brain Workshop for Parkinson’s.
- Member serving in advisory role for Cure Parkinson’s Trust, LTD, and the Michael J. Fox Foundation.
- Continued support of the Clinical Trial Transportation Program (CTTP), which has recruited and supported over 150 volunteers to participate in Parkinson’s Clinical Studies.
- Participating in a partnership with Hartford Healthcare to provide better care for those living with Parkinson’s. Hartford Healthcare believes in a bottom up approach to patient care where the Patient’s voice is truly listened to by their healthcare provider.
Special thanks to our board for their time and talents: Mike Bergamo, Steve DeWitte, Michelle Hespeler, Allyson Kinney, Lisa Dolishny, Vicki Kulas, and Kelly Kearney. I have the pleasure of working with this talented, passionate Board that collectively has broad backgrounds in both business and academics. Five (5) members of the Board have Parkinson’s, which constantly reminds us what we are fighting so hard for. Together, I know we can make a difference in the lives of people with Parkinson’s.
Please watch your email each month for our Newsletter. We promise that it will timely and chock-full of useful information, and it will always have our members as its focus. We also plan to reinvigorate our social media channels, including Facebook and Twitter, so it you aren’t already following us there, please do!
CAP exists with the hope that someday in the not too distant future, a cure will be found. I welcome your input and support. Please ontact me anytime to volunteer or to let me know how we can help in your battle with Parkinson’s.
Special note: On Saturday, November 18th CAP is hosting a Gala event at the Aqua Turf Club in Plantsville, CT to benefit research programs, clinical trials and wellness programs for people with PD. Please join us for what will prove to be an extraordinary evening. You can buy tickets at www.parkinsonsct.org/gala.
Karl C. Hespeler