Dear Friends, Family and past supporters,
On February 11, 2019, my husband Doug McIlvaine, at the age of 59, was diagnosed with ALS and was given 2-5 years to live. ALS is a motor neuron disease that is 100% fatal. There is currently no cure and very few treatments. Despite the efforts of so many top researchers and doctors, there is still little known about this disease.
Fast forward 5+ years and we feel blessed that Doug is not only still with us but is doing remarkably well. We have had a banner year so far where we are incredibly grateful that Doug has been able to witness some remarkable milestones that we never thought he would see. Our youngest son Charlie graduated from High School and will be off to college in the fall. He also achieved the rank of Eagle Scout. Our oldest son Danny and his wife are expecting our first grandchild in July and our daughter Emily is living life to the fullest and shares her love and talents in so many beautiful ways.
Some of the most well respected neurologists in the country have reviewed Doug’s case and are stumped by his slow progression. There continue to be many unanswered questions and despite what is visible on the outside, there is anxiety and fear lingering with every possible symptom. We are eternally grateful for Doug’s good health but for so many patients that we have met along this journey that have received this earth shattering diagnosis, the results have been far different.
ALS is considered an orphan disease and the only hope for answers is greater awareness and more funding! Our family remains committed to the goal of funding a cure!
On June 22nd, a small but dedicated group will set off on their bicycles for a 4 day, 200 mile ride up the eastern seacoast in what will be a mini version of our 1000 mile ALS Ride for Hope last year from Oxford, Ohio to Boxford, MA. This year,we will ride 50 miles a day, starting and ending at our home in Topsfield, MA. We will cycle up to Portland, ME where we will gather with ALS patients and their caregivers at Bug Light Park to share stories of hope, grit and determination to beat this disease. We would be so very grateful for your support! Funds raised from this event will go toward our fundraising for the 2024 MA Ride to Defeat ALS which will be happening on September 28th in Wayland, MA. All proceeds will go to the ALS Association.
In closing, I want to mention that I just listened to a webinar entitled: Hope in ALS: Things I've Learned by Dr. Richard Bedlack, a well respected neurologist out of Duke University who is one of the doctors who has reviewed Doug’s case. Dr. Bedlack spoke about the role that hope can play in a patient’s journey. Specifically, he highlighted how important it is to have a support group of friends and family that surround the patient who can constantly infuse the patient with hope. It is without question, Doug has this one covered hands down! We wouldn’t be where we are today with you and your constant reminder that we are not alone!
Thank you to everyone who has already stepped up to support these efforts by offering to be a part of our support team along the way - housing, food, driving, technical assistance and of course sponsoring our ride with a financial donation. We are so very grateful and hope one day to ride in celebration of a cure!
With hope and gratitude,
Dolly
PS if you are interested in following our 200 mile Ride for Hope 2, here is a link to our blog:
https://free-5160213.webadorsite.com/
Prefer to make a donation by check? Click here for a printable donation form!