CNS Local Life
ALS Cayman members Danielle Dyson (left), Jovanna Wright (second from right) and Stephanie Scott (far right) with volunteer Suzanne Bothwell at their booth at Pirates Week last year

(CNS Local Life): A recently established non-profit in Cayman dedicated to supporting people suffering from ALS (amyotrophic lateral sclerosis), or Lou Gehrig’s disease, is raising awareness of this debilitating condition as it seeks funds to help patients with their medical needs. Toward this goal, ALS Cayman in May has been stepping up its social media presence as well as participating in various events as part of ALS Awareness Month.

The organisation is also receiving support from Dr Sharn Mentz who, in honour of Cayman resident Jeffrey Dyson, who passed away last year from ALS, is taking part in the OluKai Ho’olaule’a eight-mile paddleboard race in Hawaii on 9 June, to raise awareness of the disease and funds for ALS Cayman. Mentz, who is participating in the race for the fourth straight year, has set up a GoFundMe page to take donations.

As of last year, according to statistics compiled by the non-profit, five women and four men in Cayman had been struck by the disease, with two of those patients passing away in 2018. The chief objective of this organisation is “to support ALS patients to remain as independent and as comfortable as possible, for as long as possible”.

Part of that support involves assessing and addressing the needs of the known ALS patients in Cayman. Adonza Harrison, a director of ALS Cayman, detailed some of the aims of the organisation. “We would…like the ability to invite medical experts based overseas to provide educational sessions to the medical professionals in Cayman, who are willing to assist ALS patients,” she told CNS. “We also want to use funds to help ALS patients to travel overseas for medical treatments which are not available on island” as well as purchase medical equipment. 

The charity is also compiling data on people living with ALS or have died due to the disease, Harrison said, adding that the group’s website has an online form for people to share this information confidentially.

The other board members are Dr Luana Look Loy (director and chair); Danielle Look Loy Dyson (director and treasurer), whose husband was Jeffrey Dyson; Stephanie Scott (director and secretary); Jovanna Ebanks (director); and Kimberly Masters (director). ALS Cayman said in a letter seeking sponsorship that it was founded by a small group of people who “have been personally affected by ALS. With first-hand experience, we are acutely aware of the difficulties and challenges encountered.”

And those difficulties eventually become insurmountable. “ALS is a rare, rapidly-progressive neuro-degenerative condition that affects nerve cells in the brain and spinal cord,” the organisation explained. “As the illness progresses, it becomes increasingly difficult to initiate and control muscle movements, thereby resulting in significant disability. Those suffering from this incurable condition can lose the ability to walk, talk, eat, drink and breathe unaided.”

The most famous person to suffer from ALS, apart from baseball player Gehrig, is theoretical physicist Steven Hawking, who defied the odds by living until he was 76. The average survival time after onset of the disease is three to five years, though people have lived up to 10 years or more. While there are some medications on the market to treat the disease, it remains incurable.

In Cayman, a major issue is the lack of support available for patients, Harrison explained, mainly due to a lack of information. “ALS is also a rare condition which usually affects 1 in 100,000 worldwide, so many people do not know about (the disease),” she said.

Since its establishment, the non-profit has participated in various events, including taking a booth during last year’s Pirates Week and the Guardians Alive walk/run in April, in which ALS Cayman received proceeds from that event.

As part of efforts to raise the profile of ALS Cayman, the organisation held a launch event Friday, 24 May, to introduce the non-profit to the medical and insurance community as well as special needs professionals and potential sponsors, among others.

Harrison hopes increased publicity for ALS Cayman will help people understand the trials that ALS patients must endure. “Whilst unfortunately patients suffer muscular atrophy, their brains remain fully functional and as such ALS patients need to be treated with due respect for their mental capacity but with patience for their myriad physical challenges,” she said.

For more information, go to the ALS Cayman website or Facebook page