Help us raise money to find a cure for ALS!
|Event:||New Haven Walk|
|Date:||Saturday, October 17, 2020|
Hello Family and Friends,
First of all, I would like to thank all of you for your past contributions to our walk. When Bruce passed away on January 11, 2013, I made it my goal to continue to support the Connecticut Chapter of the ALS Association. Our team goal was to raise $100,000 in ten years and WE DID IT!!! The staff at the Connecticut office is always there to support patients with ALS (pALS) as well as caregivers of those with ALS (cALS) by helping to provide rides to and from doctor’s appointments, retrofitting homes so patients can remain there (like Bruce was able to do), supporting the emotional toll both on patients and their families with support groups held in various locations around our state, and loaning equipment to make living a bit easier when fighting for every step, word, bite and breath. Once again, this year we will walk in Bruce’s memory and honor and try to help this amazing organization.
For those of you who may not know, my husband, Bruce was diagnosed with ALS (also known as Lou Gehrig’s disease) in November of 2008. ALS (Amyotrophic Lateral Sclerosis) is a 100% fatal neuromuscular disease. ALS attacks the nerve cells in the brain and spinal cord that control voluntary muscle movements, like chewing, walking, breathing, swallowing and talking. It is invariably progressive. Lacking nervous system stimulation, the muscles soon begin to weaken, twitch and waste away until individuals can no longer speak, eat, move or even breathe on their own. Through all this, the mind is unaffected. There is no known cure although with the past few years’ Ice Bucket Challenge has really increased awareness and funds to help find a cure. For 22 years there was only one drug available to pALS (Rilutek) which only increased the lifespan by a few months.
Over the course of a lifetime, one person in about 400 is likely to develop ALS, a risk not unlike that of multiple sclerosis. But with the rare exception of an outlier like the brilliant physicist Stephen Hawking, who has had ALS for more than 50 years, it usually kills so quickly that many people do not know anyone living with this disease. Only one person in 10 with ALS is likely to live for a decade or longer. The disease is most commonly diagnosed in middle age, among people in their 50s or 60s, though it sometimes afflicts young adults. Dr. Hawking was found to have it at age 21.
Early symptoms can be very subtle and thus are often overlooked or attributed to a minor problem like lack of sleep, undue stress, overwork or poor diet. However, the underlying damage can start long before the symptoms are noticed. Given the redundancy built into the brain, about a third of motor neurons are destroyed before signs of muscle loss become apparent.
Initial symptoms depend on which group of motor neurons are affected first. In about 70 percent of people, the first symptoms involve muscle weakness in the legs or arms that can result in frequent tripping, instability, stiffness, difficulty walking or inability to open a jar or turn a key. About one-quarter of cases start with muscle loss in the face, mouth and throat, resulting in slurring of speech and swallowing difficulties, and in 5 percent, the muscles of the trunk are first affected. However, in most people the disease soon spreads to affect nearly all voluntary movements.
Patients usually retain control over bladder and bowel function and eye movement until very late in the disease. In fact, after losing the ability to speak or write, many learn to communicate by looking at letters or words on a computer and using a voice synthesizer. Sorry for the graphic nature of this letter, but I thought I would add a little more information this year!
On October 6, 2019, our family, friends and I are participating in our annual fundraiser called the “Walk to Defeat ALS” in New Haven, CT at Lighthouse Point Park at 10 a.m. (check in is at 9.) The walk raises funds, creates awareness and gives us all a sense of hope. If you’d like to walk with us on our team, called “Bruce’s Buddies”, just let me know. However, keep in mind that it is more important to raise money for the cause than walk…but it’d be wonderful to show support. Whoever wants to come with us is more than welcome. This year, as we have done over the past 8 years, we will be having a picnic lunch at the park after the walk. Participants are encouraged to bring a salad or dessert or drinks to share. I will be bringing sandwiches and the paper products.
Please mail all donations (nothing is too big or too small) to my address below or you can easily go on my personal page and make a donation online with a debit/credit card. Checks can be made out to The ALS Association and mailed to me to forward to the ALS office. Donations are accepted year around, so no need to worry about not having it in by October 6th! Also, if you’re going to walk, I would like to know that by October 1st so call, email, mail a check or check out our team page. Thanks in advance everyone!
47 Old Hawleyville RD
Newtown, CT 06470