Why is the Walk to Defeat ALS so important to patients, caregivers, friends, and family?
Even more than the sense of community, love, and friendship on Walk Day, your support of the Central Jersey Walk to Defeat ALS provides much needed care and equipment to patients as well as advancing research for treatment and a cure for this devastating disease. Each of our Walk Teams have their own unique stories about why they Walk each year. We’d like to share one of those stories with you about Team Sonal who Walk in memory
of Sonal Shah.
Just months before my Mom’s first ALS symptoms surfaced in November 2009, she was actively running for township committee in our hometown of Basking Ridge, NJ. My Mom, Sonal Shah, was eventually diagnosed with ALS in June 2012 and passed away in November 2015 after a valiant battle.
My Mom always had a drive and sense of purpose throughout her life. In addition to her passion for public service, she dedicated her life to her work as a corporate professional. As her daughter and only child, I learned a tremendous amount from just watching her balance her responsibilities as a mother, wife, career woman, and global citizen.
My Mom exuded warmth and love wherever she went and whomever she talked to. She was also an unstoppable force and knew how to get things done.
After my Mom’s diagnosis, she threw herself into ALS advocacy work. She knew the importance of ALS awareness and fundraising and was determined to create a successful team at the Central Jersey Walk. She was truly the driving force behind “Team Sonal” these past few years. My dad and I continued her legacy at this year’s Walk in October. Even though it was our first Walk without her, it was very touching to have everyone come together for a cause we all deeply care about. We will continue to make the Central Jersey Walk a success.
In addition, although wheelchair-bound and with speech degradation, my Mom forcefully lobbied Congress in 2014 and 2015 at the ALS Advocacy Conference in Washington DC to increase resources dedicated toward finding a cure for ALS and improving patient care. This year, my dad and I joined Congressman Leonard Lance at the Conference on Capitol Hill to promote the Dormant Therapies Act, which will accelerate the development of treatments of diseases, like ALS.
My Mom also wanted to share her story, spread awareness, and help other patients and their families struggling with this horrifying and life-taking disease. Typed with only one finger because the others were by then tightly curled against her palms, she wrote the book “My Life, Legacy and ALS” which was published in February 2015.
My Mom achieved her final goal a month prior to her passing. As a result of her tireless advocacy, May was established as ALS Awareness Month in New Jersey in October 2015. My Mom was ecstatic to see this become law.
Without the help of the ALS Association Greater NY Chapter with the funding it receives from the Walks, my Mom would not have been able to do all the things she accomplished. From the equipment loan program to the emotional support our family received, the Greater NY Chapter really helped us stay one step ahead of this horrific disease.
The ALS Association is working hard on all fronts with research, clinical programs, advocacy, and patient care. Your participation and contribution to the Central Jersey Walk to Defeat ALS will make a big difference as we continue our quest to end ALS and offer care to people suffering from this horrible disease. We must continue to fight together, in honor and in memory of all of our loved ones.