This year was a mixed bag particularly because of COVID affecting all of us across the globe -- from the overnight sellout of toilet paper, to lost employment and loved ones, to the cancellation of our 2020 DYRK1A Family Meetup and Conference, it is a year we will not forget. Add to that the additional challenges of raising our DYRK1A children, it is safe to say we are all super heroes!
When we take a closer look at what we have accomplished as a DYRK1A family, we find that there are still a ton of things to celebrate. As we close the year, we encourage you to make your own list of top memories and share it with our community on Facebook.
#1 400+ Families
As we learned from last month’s interview with Amy Clugston and Janet Banks, our community started with a handful of families back in 2015. Look at how far we’ve come only 5 years later!
We are thankful that more geneticists and specialists are recognizing and pinpointing genetic abnormalities across the genome, including our very own DYRK1A variants. Every member of our community can certainly attest that these diagnoses are vital to the care and wellbeing of our children. To those of us who joined this year, we are delighted to have you and we encourage you to engage in the Facebook group, if you have not already.
#2 Run-A-K for DYRK1A
This year’s Run-A-K for DYRK1A, the organization’s first fundraising event, was a huge success. It was heart-warming to see all of the families connecting via shared experience across the globe. We also saw an overwhelming number of personal donations from family and friends. We raised nearly $20,000 for the foundation, which will help us improve the services we bring to you. It was inspiring to see how much love and support is bestowed upon our children.
Thank you to every family that participated in the event and donated to our foundation. We also want to give a special thanks to the volunteers who made this event possible.
#3 DYRK1A Awareness Day
This year’s awareness day was celebrated across the globe through our Run-A-K for DYRK1A. Awareness day activities extended far beyond our run/walk event, however. Our DYRK1A family and friends in Spain were honored by many municipalities across the country, including the city of Madrid. On August 21st, many of the buildings in these towns and cities were dyed orange to commemorate DYRK1A Syndrome (News Article).
To spotlight DYRK1A Syndrome, Emily Apodaca and Ronan Wynkoop and their families were featured in a heart-felt short film that showcases the reality of raising an atypical child. Emily and Ronan’s parents share personal details of their journey. The mix of joy, grief and the recalibration of expectations are feelings we’ve all experienced. We are thankful to have this beautiful, emotional video we can share to new members of our community, corporate partners, and potential researchers.
#4 Corporate Donations & Viral Awareness
Apart from the individual contributors who have graciously donated to our foundation, we have been fortunate to receive our first recurring donation from Shared Health Alliance. As a result of the relationship with one of our very own board members, Shared Health Alliance is donating $5,000 a month for an entire year to our foundation, DYRK1A Syndrome International Association. Corporate and business sponsors are imperative to the growth of our foundation and our ability to solicit research.
Widespread awareness also helps us meet researchers and specialists in the medical community, and serves to raise the profile of our syndrome overall. In March of this year, the renowned sports writer, Sid Hartman, turned 100 (#sidtenniel). In celebration, he chose three organizations to receive donations, including our foundation.
Hartman chose the DYRK1A foundation to honor his grandson, Quintin Hartman, who is one of our own. Sadly, Sid Hartman passed away October 18, 2020. In his memory, the same three organizations were chosen to receive additional donations. Not only were these donations a boon to our foundation, Sid Hartman’s notoriety contributed to awareness for his grandson and our entire DYRK1A family. We extend our heartfelt thanks to the entire Hartman family.
#5 Launch of New Initiatives for DYRK1A Syndrome International Association
As we grow, we have dedicated volunteers working to formalize our organization. What started as a Facebook group with the purpose of bonding has now become an international organization with the mission of improving the quality of life for those affected by DYRK1A Syndrome. Through support, education, research and collaboration we are working to improve family life, daily living, and clinical care for those with DYRK1A Syndrome. As part of that mission, volunteers within our organization have brought us excellent new ways to learn, grow and connect. Learn about each of the initiatives launched in 2020:
DYRK1A Insights: This webinar series occurs 4 times a year and provides in-depth information from researchers and specialists who are dedicated to furthering our understanding of DYRK1A Syndrome.
DYRK1A Chats: This video conference occurs 4 times a year and offers family members in our community the opportunity to share knowledge and experiences around specific topics.
DYRK1A Blog: Monthly articles will include heart-warming personal stories from parents, organizational happenings, and helpful information on everyday life with our DYRK1A children.
DYRK1A Digest: This monthly email digest will include events, announcements, a link to a blog article and other pertinent resources. You can sign up here.
If you would like to volunteer, please reach out to Amy Clugston.
As we reflect on 2020, we want to thank all of you who have engaged in our community through sharing questions and wisdom in our Facebook group, donating to our foundation, and/or volunteering your time to our organization. We wish that this holiday season will bring joy to your family. And, we cannot wait to grow and learn with you in 2021!
