The Fray's Familial Fight With ALS

Hi everyone, my name is Sydney, and I am one of four children of the man some of you know as Mr. Fray, and some of you know as Stephen. I know him as Dad. On November 11, 2022, Dad was diagnosed with ALS (Amyotrophic lateral sclerosis)! Me, my sister Skylar, and two brothers, Stanley and Stuart, are launching this GoFundMe campaign for Dad, as we need your help at this time to fight this disease.

Me and Dad a the Knicks

Stuart and Dad visiting Skylar in NM

Stanley and Dad in Mexico

During all our lives (and, thankfully, we’re all grown), while our mom led our sister’s Girls Scout troop, our dad was the troop’s “Cookie Dad.” He participated and led our Cub & Boy Scout troops assisting my brother to obtain his Eagle Rank and me my Life Rank. He was our softball, baseball, and basketball coach. Along with our mom, he was our tutor, chauffeur, cook, and repairman. He took us on ski trips in the Rockies, campouts upstate in the Adirondacks, sea kayaking the Outer Banks and canoeing the Northern Tier. We vacationed on Martha’s Vineyard, traveled to Belize, and took a cruise to Mexico. So many great memories! He was a very active and involved father, working hard in his career to take care of us.

Dad worked for 37 years as a Construction Civil Engineer and his career was abruptly cut short on May 4, 2023, when he was laid off due to rapidly increasing complications. We began seeing Dad falling, feeling overwhelmed, and we all became frightened. Dad began struggling to commute to work when he was unable to walk up the stairs to get to the train platform; he no longer was able to ride the CitiBikeⓇ to get to his office from Grand Central. His daily living activities including cooking, cleaning, dressing, and showering, which he had managed with no issues, have become increasingly difficult. The disease will eventually destroy his entire nervous system, including his lung and heart; it is deadly and little can be predicted about Dad’s prognosis. Our father was an active, productive, outgoing, and physically healthy man. The downturn in his health is breaking all our hearts, but not his. Stephen Fray works and fights hard to overcome the medical challenges he is now facing.

Medically unusual as ALS is, our family has been stricken with the rare “Familial” ALS (FALS), which affects 10% of the ALS population. ALS affects .08% of African Americans.

My grandmother, Alvera Fray had the same genetic mutation as Dad does. Grandmother lived six years before succumbing to ALS. With the confirmation of the mutated SOD1 gene, my dad wants us and our extended family to become more aware of the genetic component of this disease. The genetic connection has a 50/50 chance of being passed on. Even though there’s no cure, one preventive pharmaceutical for the genetic form of ALS called Qalsody is showing signs of slowing the onset of symptoms by targeting the mutated gene. As the next generation, we are all figuring out how we want to engage in this medical process. Dad intends on paying his knowledge and experience with genetic ALS among African Americans forward to the next generations, ours, and others.

We are in the slow process of accessing disability services for Dad. According to the available information and based on our family’s experience with Grandmother, the average out-of-pocket costs not covered by insurance is $125,000-$200,000 a year to live with this disease. We are thankful that Mom has excellent insurance through her work. However, with Dad’s present circumstances of no income and exhausted savings, he needs your help to live this difficult life.

We are asking for you to join us in funding $150,000 to help cover the cost of the following items which Dad needs now:

We are deeply thankful for your support and appreciate anything you can donate to help our dad fight this insidious disease. Please keep our dad in your thoughts and prayers. We will provide timely updates here on the GoFundMe campaign to let you know how the fight is going.

God bless you all,

Sydney, Skylar, Stanley, Stuart & Dawn