Year 6 – Team NoALSing Around Still Can't Do It Alone
It has been 3 1/2 years since Al died and my life has changed in more ways than I would like to think about. What I DO think about is how not much has changed for those dealing with ALS on a daily basis whether as a patient, caregiver, family member, friend or all those dedicated professionals treating them.
I am tired of this disease. I am frustrated by it. I want to forget all about it. But I can't. I see my friends still dealing with it and see how mentally and physically draining it is. It is harder still when there is as yet no hope for a cure. What there is is a new drug!
Radicava is the first FDA approved drug in 22 years. It is hoped that it will be available as early as August although the cost of this drug is not yet known nor how much insurance will cover. It is said to decrease the progression of symptoms by 35%. The treatment will consist of a 1 hour infusion for 14 days, then off for 14 days and this will be repeated indefinitely. Certainly not easy but it could mean an additional year of life and that is HUGE.
The families and patients still fighting ALS depend upon the ALS Association to guide them to the resources and information that make fighting this disease a little easier. They are still seeing 75-100 new patients a year and at any given time are working with about 265 people living with ALS. Last year they helped 354 people. They have also partnered with Yale Medicine to open an ALS care facility in Stamford.
None of this would have been possible without your donations. The money we raise now helps to fund patient services, offer support and to fund research.
Even with the strides being made "unfortunately it's the continuing heartbreaking stories and the people we see being diagnosed with this disease who are trying to make the most of it. Wish there was more we could do ..." Jacky Rose, Development Manager
Al and I both benefitted from the resources available to us through the local ALS Chapter and your donations through the Walk will allow them to continue their programs and add additional ones to help patients and their families. Regardless of the success of the Ice Bucket Challenge ALSA in Connecticut still needs funding so that they can continue to be there for the families fighting ALS now and to provide hope for the future - a world without ALS.
Consider walking with us on Saturday, October 14 at Sherwood Island State Park. I am grateful for all of those who have supported us over these last years - thanks to you we have raised close to $40000.00. Please continue your support.