STATEN ISLAND, N.Y. — JAR of Hope, an organization that raises funds to research a cure for kids with Duchenne muscular dystrophy — that’s recently expanded its mission statement to include kids on the autism spectrum — has donated $11,702 to Crimson Rise, a Staten Island foundation for young autistic adults.
The gift will help CrimsonRise with its new Spell to Communicate (S2C) initiative.
The donation is symbolic of a new working relationship based on the fact that some children have been afflicted with both Duchenne muscular dystrophy and autism.
According to its website, the mission of CrimsonRise is to serve people with autism who have sensory, movement and communication differences “by presuming competence and providing communication access and regulation support.”
The organization has been doing that by supplying one-on-one S2C coaching to new spellers — non-verbal people with ASD who use tools like letter boards or keyboards to point and spell out the words, sentences and phrases that they hope to communicate.
Their goal is to train fluent spellers and give every non-speaker “Spelling to Communicate” access. And through social programs that connect spellers with peers, the CrimsonRise participants have additional opportunities to learn and find a path for themselves and others.
Duchene muscular dystrophy is genetic disorder of progressive muscular weakness, typically in boys characterized by progressive muscle degeneration and weakness due to the alterations of a protein called dystrophin that helps keep muscle cells intact.
It’s very rare, occurring only once in every 3,500 live births.
JAR of Hope (https://www.jarofhope.org/) was founded by Jim and Karen Raffone after their son James Anthony (“Jamesy”), then 4 years of age, was diagnosed with Duchenne muscular dystrophy in 2013.
These kids can no longer walk by 9 years of age, as is the case with Jamesy Raffone.
“We’ve been surprised at how many kids have both Duchenne muscular…
Read the full article here
Leave a Reply