Who We Are
Our Mission
Empowering the Upstate SC community to fill the gap for those Touched By ALS, by providing resources to assist with financial burdens, as well as physical, emotional, and spiritual needs.
Our Story – the unabridged version a.k.a. Taylor’s Story
If we could roll back the clock and perhaps see into the future, I would have never imagined I would be where I am today. In February of 2020 I noticed I started having trouble cutting my daughter’s toenails and that after my routine runs, the usual muscle cramping and twitching became full-time muscle fasciculations, or involuntary spasms (for us non-medically inclined individuals). I had a routine physical scheduled for July and knew that with the epidemic of Covid-19 that I would not be able to get in to see a doctor any earlier than this. So, after this visit and a handful of referrals from my PCP, I saw a neurologist in August and within two to three weeks was informed that all signs pointed to ALS. Due to the sudden onset and my young tender age, we were thankful the neurologist was interested in investigating the chances of it being another disease by the name of MMN (Multifocal Motor Neuropathy). After a few months of plasma infusions and nerve ultra-sounding by Wake Forest Baptist, MMN was officially ruled out. I was then introduced to the Clinical Coordinator at the Prisma Health ALS Clinic in Greenville who would be coordinating my future care. I use the word ‘care’ because ALS is terminal. The average life expectancy for my type of ALS (Limb Onset) is three years. As you can imagine the phone calls, prayers, support, and “what can I do?” have continued to bless our family through today.
An opportunity presented itself when my employer Clayton Construction’s Marketing and Business Development individuals were able to meet with the ALS Clinical Director, Ms. Suzy Hobbs. The message received from her was “HELP!” Specifically, there is large need for funding for direct patient care. After some internal discussions about sponsoring a golf tournament, it was discovered that there was no “official” group to support these individuals and their families. Although in 2015 when Greenville became the home of one of two public ALS Clinics in the state accredited by the ALS Association, some volunteers had secured a domain name and developed the formal name, Touched By ALS.
From 2020 to 2022 there has been a 50% increase in patient population attending the Greenville ALS Clinic. Unfortunately, but fortunately, Greenville has become a location for those living with ALS. However, any donations or funding received by the ALS Clinic prior to 2022 was technically through the hospital system and allocated at their discretion. So, after some Q&A with Suzy regarding the future purpose of this group, she welcomed the offer of assistance with Touched By ALS. In the fourth quarter of 2021, Clayton Construction established a GoFundMe Campaign and extended their marketing resources to raise the initial funding necessary to formalize the organization and develop company branding. We continued to work diligently in 2022 and in October became recognized as an official 501(c)(3). Our mission is “to empower the community to fill the gap for those Touched By ALS by providing resources to assist with financial burdens, as well as physical, emotional, and spiritual needs.” How do we do this? We do this by fostering programs that address the financial needs of patients and families dealing with ALS on a needs-based criteria. We also provide educational opportunities for the public regarding ALS, as well as a collective of resources for other programs such as support groups and available community resources for individuals and families Touched By ALS.
This raises the question, what do we do now? We need your help. Help us bridge the gap for patients and their families so they can maintain some level of independence and live with dignity as they navigate this fatal disease. Learn more on our HOW TO HELP pages: Volunteer, Fundraise, Donate and Corporate Sponsorship. Help us bridge the gap.
We are ALL Touched By ALS.