Mission
It is the mission of the Alaska Chapter National Down Syndrome Network to provide education and information for members, new parents and the community as a whole; to give parent-to-parent support to families of children with Down syndrome; to gather socially and share experiences; and to be an advocacy group for individuals with Down syndrome.
Vision
The families and friends of the ACNDSC believe all people deserve respect and opportunities regardless of differences; that people with Down syndrome have much to offer our communities, with their talents, courage, spirit, open acceptance and love; that people with Down syndrome can surprise us with their accomplishments when given opportunities and support; that people with Down syndrome have the right to determine their own lives as much as feasible.
Services
We are a parent support group – parents who have banded together to share our experiences and help each other learn along the journey of raising our children and our “special” child. We have no staff, or office, or professionals running the program. We do as there are people with a passion to do, so “services” may vary over time. Our main broad goals are:
- New parent information and support including a new parent gift basket and books
- Parent support through social activities and educational offerings / sharing “what works”
- Physician and community education
- Professional educational offerings
- Library of current books
Board of Directors
TRISTAN GORSKI
President
ADAM HOLZER
President Elect
LISA THOMAS
Vice President
KARLAN FRANTZ
Secretary/Special Events
ADINA KAMILOS
Treasurer
JULIE BROYLES
Social Media
TAYA PETERSON
Member-At-Large
MATT FRAIZE
Social Chair
KIM WILCOX
Social Chair
SAM THOMPSON
Professional Liaison
OPEN POSITION
State Rep
OPEN POSITION
Member Representative
Our Story
Families Supporting Families
The first gathering of a few folks interested in a parent support group was held April 16, 1986 in Anchorage, Alaska organized by a local Infant Learning Program teacher. An initial potluck for all families occurred in June, with 6-8 families and several professionals attending. From that get-together, the AK Chapter National Down Syndrome Congress was born. Donna Davidson took the reins and ran the program for 13 years, making it an active statewide group. The Chapter became official, creating bylaws and incorporating in 1988. Today there are approximately 120 member families. There are Area Representatives in several of the communities around the state in order for families to have local get-togethers. Because the formal name of the group is somewhat unwieldy, in 2018 the Chapter began doing business as (dba) Alaska Down Syndrome Network, though the official name remains Alaska Chapter National Down Syndrome Congress.
Education has always been the top priority of the group. New parent packets were created and have evolved into packets for English and Spanish speaking parents, new grandparents, and newly pregnant parents. We have also now created a welcome gift basset for brand new babies. We have a lending library of current books, and books have been purchased for the school system and the Loussac Library which are accessible around the state. We have brought up to Alaska nationally and internationally known speakers and educators on Down syndrome, including Siegfried Peuschel, MD; Patricia Oelwein, educator; Mark Leddy, SP/L; Barbara Buswell, and Sue Buckley of London, educators. We have a small scholarship program to help families attend DS conferences “outside,” as well as to help provide sports, music or educational activities for our individuals with DS. A second goal of the group is to have social opportunities for connecting. Our one fund-raiser is the Buddy Walk, similar to those throughout the country, held annually. What started as a handful of 6 or 8 loyal families walking around a park in the rain has grown to an event that has over 350 participants – when it is sunny!
AK Chapter National Down Syndrome Congress is a 501(c)3 nonprofit organization. Membership is open to all individuals with Down syndrome, their families, educators, healthcare professionals and anyone interested in making a difference in the lives of those with Down syndrome.
We are affiliate members of the National Down Syndrome Society, the National Down Syndrome Congress and Down Syndrome Affiliates in Action