Visit page with the original article here. The NHGRI Community Engagement in Genomics Working Group aims to engage communities to ensure that genomics and genomic medicine benefit all. Overview From left to right: Gwen Darien, Carla Easter, Kellan Baker, Suzanne Held, Maya Sabatello, Alma McCormick, Christina Daulton, Ella Greene-Moton, Alicia Santiago, Greta Goto. The NHGRI Community Learn More
Stories
We are so happy for Benny and his family! (originally posted by Breanna Brian)
The last two weeks have been a whirlwind. Tuesday, August 29th, we discovered that an autism service dog needed a forever family who he could help. They trained the dog for meltdowns and elopement. For those who don’t know, meltdowns and elopement are manifestations of my son’s disability. Learn More
Gateway to the Arctic: Employment Summer Skills Camp
This summer, July 8th through12th, was the first-ever Employment Summer Skills Camp. Held at Gateway to the Arctic, eligible students ages 15 to 22, spent the week learning various life skills. Some of which included basic agricultural skills, carpentry skills, wilderness safety skills, and culinary skills. In addition to the skill of the day, students Learn More
Parent Conference 2019: An interview with Elizabeth Joseph
Elizabeth Joseph is a scholarship recipient who traveled from Kongiganak to attend the 2019 Annual Parent Conference: Transforming Challenging Behaviors into Meaningful Communication, to learn some useful information on how to manage the challenging behaviors of her two children. Stone Soup Group interviewed her following the 2019 Parent Conference. Here is what she had to Learn More
Adventures In Autism : The Alaskan Ferry
My quirky family and I recently embarked on the great adventure from Alaska to our new home in Washington. We decided to take the Alaska ferry. Having two teens who experience autism that can’t fly it turned out to be a great idea. Special thanks to my mother and father for making it possible, and Learn More
Caregiver Depression – Real, Raw, and “Normal”
Depression is frequently a topic we tip-toe around, especially as caregivers. With all the issues we deal with on a daily basis, our problems are insignificant, right? WRONG! Parent and special needs advocate Maria Pepperworth speaks openly about depression as a caregiver today. Life as a special-needs parent can be exhausting and lonely. Special-needs parents have Learn More
Single mom raising two teenagers who experience autism
I always get questioned about what it’s like being a single mom raising two teenagers who experience autism. (technically the 18-year-old is considered an adult now). My answer is always pretty much: exhausting, educational, and interesting. Autism is so different in both of them that it really is a new adventure for each. Ty is my Learn More
$1,800 a Day…
Stone Soup Group Board Member, Matt Findley, explains how his son reached the lifetime cap imposed by his employer-based healthcare plan in less than two years. Hear one way Alaskans like his son who are living with a disability would be impacted by potential changes to healthcare. Thank you Matt for sharing your story!
“…we are GROOT” a Guardianship Story
My son Tyler turned 18 this month. With that came a whole new world called guardianship. What a weird feeling it was. Being in a courtroom. Sitting across the room from my son, who was sitting at a table with an attorney he just met. Answering questions and waiting for a judge to grant me Learn More
We are an autism family…
By Maria Pepperworth – Alaskan parent, advocate, rocker! Whenever people ask me about autism I like to use the word experience. My kids “experience” autism. In reality, our whole family “experiences” autism. It impacts the whole family. Autism is different in every person. It’s unpredictable, it’s difficult, it’s amazing, it’s a puzzle. If you would’ve Learn More
