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
Stories
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
What Healthcare Looks Like For My Family…
Having a child with a rare genetic disease or a lifelong disability opens your eyes up to a whole new understanding of how medical care, prescriptions, and insurance work. Before my kids, I thought I understood… You had insurance, you had a co-pay and a deductible, and you got the treatment and medication you needed Learn More
Two Bros
David is a 25-year-old student at UAA who experiences bi-polar disorder as well as ADHD. Today he shares how these special needs and others have impacted his and his brother’s lives. My brother and I were born a year and a month apart. Early on we showed signs of being a little more Learn More
Q & A: Finding community with a rare diagnosis
Jordyn Cleveland was born deaf. In 2013 her and her family found out why. At the age of 13, Jordyn was diagnosed with Usher syndrome a genetic condition that worsens over time and will further affect her vision. In an effort to expand their support, Jordyn and her mother Mandy recently attended the Usher Syndrome Learn More
Brittney’s Story Continued…
The money: There are many factors that make living in Barrow with special needs unlike anywhere else. Basically, living here and having to seek medical professional help = EXPENSIVE and very nerve racking. We have been very lucky with my sister and her getting the medical help she’s needed. But we have also been Learn More
Brittney’s Story: Part 1
Brittney Toalston is sharing her family’s story with us about what it is like to have a family member with special needs in rural Alaska. This story will be delivered in four parts. My family has lived in Barrow, 320 miles north of the Arctic Circle, for the last 29 years. My sister who is Learn More
Happy Holidays?
By Kate Sondgerath, Health Information Specialist, Family Voices Indiana Each year around this time, my husband and I get a little restless. While family and friends are excitedly planning for the upcoming holidays, we fret about them. Our parents may have had some inkling of anxiety about the holidays—but nothing like this. Having a child Learn More
SCHOOL YEAR RAMBLINGS OF A MOM
It’s that time of year again. The mad rush begins! … I would love to sit here and type a blog that reflects a perfect and peaceful life, but that is not my actual reality.
Rachel’s Story: Reflections from the American College of Medical Genetics (ACMG) Conference
This contribution is brought to you by Rachel Vandiver. Thank you for sharing your story. In order to fully understand my personal experience as an Advocate Leader at the ACMG Conference for 2015 I feel it is necessary to give a brief history of my personal experience with genetics. For me, genetics was just something I Learn More
