Dear Friends and family,
I hope this letter finds you well following this most unusual and difficult year. While much has changed in the past year, we find comfort in routine happenings, and of course I remain committed to my yearly May fundraiser, Great Strides for Cystic Fibrosis. With COVID infection possibilities still a reality, the Great Strides walk will begin with a virtual “kickoff” on the 15th and participants will safely make personal goals to walk and raise money for this important cause. We are hopeful that perhaps in 2022 we can all walk together for an in-person fundraising event.
The Cystic Fibrosis Foundation is funding seven academic institutions and many pharmaceutical companies to support focused research addressing the specific cause of the disease for all people with CF regardless of their underlying mutation. Remarkably there are over 1700 genetic mutations of CF; the foundation is truly finding “the Path to a Cure”. I think we can all marvel at the wonder that is scientific research and development, particularly after watching new vaccines come to market within a years’ time. Truly an amazing accomplishment, and I hope many of you are now feeling some relief after having received your shots! I do pray over this year you have all remained healthy, or if having contracted COVID fully recovered.
Madeline, now 31, has been taking the new medication, Trikafta for almost 3 years (July 2018-2021). Because of this miraculous drug, directed at her genetic type, she has not been hospitalized for this entire 3 year period. Previously, she would have had a minimum of 4 stays in hospital per year. Trikafta is one of many drugs the foundation has made available to patients with Cystic Fibrosis. Of course, we are most grateful!
With the CF Foundation’s commitment, we know that more personalized medications are being developed for even better outcomes for Madeline’s genetic make-up and many others. The foundation will not stop any of its work until all mutations of the disease have the opportunity for a cure.
Once again, I am asking for your generosity to help the cause set before this amazing institution. You have all been heroes in supporting the Cystic Fibrosis Foundation over the years and hopefully, I can count on you once more. You can send a check to the Cystic Fibrosis Foundation to me at 68 Cove Ave Norwalk CT 06855 or donate through this website. Thank you for all your contributions in the past and please stay well now that we can live with a bit more freedom.