World Down Syndrome Day is celebrated on March 21, every year. It is a global awareness day which has been officially observed by the United Nations since 2012. The goal is to help people understand and support those with Down Syndrome better.  The date, the 21st day of the 3rd month, was chosen to represent the triplication (trisomy) of the 21st chromosome which causes Down syndrome. World Down Syndrome Day is also observed by participating in the Lots of Socks Campaign, or as we call it "Rock Your Socks." What does that mean? Well, on March 21, choose some socks that are going to get noticed! They might be mismatched socks or your boldest and most colorful socks. The idea is to start a conversation, so when people ask you about your socks, you can tell them, “I’m wearing them to raise awareness of Down syndrome,” Then you can tell them everything you want them to know about Down syndrome. 

The Alaska Down Syndrome Network has partnered with True North Federal Credit Union to design socks from artwork created by our Alaskan DS community. The socks are then sold as a fundraising event to raise money for items such as scholarships we provide our DS members, social events, and educational opportunities for our network and our community. Purchase your socks today!! You can opt to have the socks shipped to you or meet with your area representative to pick up your sock. 

If there are any questions, please email alaskads@gmail.com.

SOCIAL EVENT NETWORKING COMMUNITY FUN

Nice to meet you…

Victor Nolcini & Mitchel Edwards

By their sister, Jennie Satterfield

Vic and Mitch were adopted into our family when Vic was 7 years old and Mitch was 3 years old. 

Vic is a 31-year-old Alaska Native young man who is loving, caring and compassionate with everyone he meets. He is known as someone who gives the best hugs. Vic enjoys full days attending classes at Cindy & Vic’s and the Arc of Anchorage where he can socialize with his peers and participate in some of his favorite activities such as swimming, bowling, playing basketball, watching movies at the theater and going out to eat. He loves live theater and goes to the Broadway Shows at the Center for Preforming Arts. 

Mitch is a 24-year-old Alaska Native young man who is a social butterfly! He hasn’t met a person yet who he doesn’t consider his friend. Mitch loves being the center of attention and loves to make people laugh. He is such a good uncle to his 3 nieces where he helps care for, play with and watch over them and his nieces adore him in return. Much like his brother Victor, Mitch enjoys attending activities at the Arc of Anchorage where he goes swimming, bowling, playing basketball and watching movies at the theater. Mitch is also a fan of Broadway Shows and the excitement that only live theater can bring. He also loves to go fishing and ATVing, rain or shine!

Both Vic and Mitch love spending time with their family and traveling. They have been all over the world, visiting countries such as Australia, New Zealand, Fiji, Tonga, Costa Rica, Mexico, Caribbean, UK, France, Spain, Italy, Greece, Israel, Turkey and Cyprus. They enjoy going to amusement parks such as Disneyland/world, Knott’s Berry Farm, Universal Studios and SeaWorld where they can ride roller coasters and eat junk food. They love listening to live music and going to Christian concerts.

Both Vic and Mitch are the heart of our family!

EDUCATIONAL OPPORTUNITIES...

GLOBAL DS Foundation, globaldownsyndrome.org is a wonderful site to use. Personal memberships are available for only $20/yr. The Foundation’s major emphasis is funding DS medical research. They are connected with the CRNC DS Clinic and do terrific Zoom educational webinars every 2-3 months on a variety of medical issues. The following synopsis is from part of November’s Zoom presentation:

“DERMATOLOGY ISSUES IN DOWN SYNDROME” 

By Dr. Jillian Rork and Dr. Allison Krahyak at the DS Clinic in New Hampshire.

The authors have created a number of handouts on specific dermatology (skin) issues in DS, with condition description, causes and treatment suggestions. The handouts are divided into three age groups – infant, school age and teenage years. (Handouts for the adult age are currently being worked on.) This information is found on the site of the Society for Pediatric Dermatology (pedsderm.net). Included information on one condition (example):

Dry Skin:

                                                                                           What it looks like | What it can be | When to moisturize | What type moisturizers to use/not to use (“natural” or “organic” may not be a good choice) | Frequency of bathing and how to bathe, dry and moisturize | Recommendation for lips: moisturize before eating and at bedtime.

Picture sheets are also available for children to use to follow a recommended routine. Specific conditions with handouts currently include:

Dry Skin | Hydradenitis Suppurativa (HS) | Folliculitis | Oral rashes | Syringomas | Alopecia | Diaper Rash.

There is information on numerous other conditions on the site but do not include handouts. The presenters were energetic doctors who obviously love what they are doing. They are willing to accept and try to answer email questions should you have a difficult issue.

The January zoom presentation was “Congenital Heart Disease throughout the Lifespan in DS”. The next zoom webinar will be on Alzheimer’s Disease in DS. Global webinars are recorded and available on their site a month after the event.