01 Feb Introducing 2022 UDN PEER
By Sarah Marshall | February 1, 2022
As I write, sitting on the sofa in my living room, the image of being in a snow globe springs to my mind. Within my snow globe is a centerpiece that sits perfectly still, unflustered by the snowstorm that is buffeting around. Albeit in the midst of a pandemic snowstorm, as a UDN PEER co-chair, I find myself strategizing our efforts as we continue to engage and support UDN patients and families.
It is with great excitement and honor my co-chair, Meghan Halley, and I have the privilege to introduce our new UDN PEER members: Tia Hopkins, Erika Cox, John Peltier, Pazhani Sundar Murukesan, and Stephanie Tomlinson. We are also honored to reintroduce you to our current UDN PEER members: Meghan Halley, Kara Anderson, Christin Siscoe, Luke Shantz, Troy Evans, and myself, Sarah Marshall.
Some of you may know that my daughter, Phoebe, received a diagnosis related to GDF11 in 2021. Meghan and her son Philip are from California, and Philip remains undiagnosed. Kara is from Virginia and is now diagnosed. Christin is from North Carolina, and her son has received a partial diagnosis. Luke is from Washington and is diagnosed. Lastly, Troy Evans, from Utah, is still undiagnosed.
Tia is from Ohio her son remains undiagnosed. She looks forward to offering support to UDN families because she understands what it’s like to feel isolated when dealing with rare and complicated medical issues. Erika resides in Texas. Her youngest daughter received her diagnosis thanks to the UDN, a gene change in TBCK. She looks forward to promoting awareness and raising money for rare diseases. John and his undiagnosed daughter live in Calgary. John remains hopeful that continued participation in the UDN will ultimately lead to a diagnosis while he contributes to the UDN PEER.
Stephanie lives in Minnesota. Her daughter was first seen by the UDN 7 years ago and she remains undiagnosed. Stephanie comes to UDN PEER with a background in advocacy and involvement with EveryLife and NORD. Finally, Sundar lives in Texas with his wife and daughter. Two of his children were evaluated at the Baylor site. Unfortunately, they both passed away and remain undiagnosed. Sundar recognizes that the UDN is his children’s last hope for a diagnosis, and hopes that his involvement puts an end to his and all diagnostic odysseys.
To our UDN patients and UDN families, please know that we have an intimate understanding of what it means to live the diagnostic odyssey and what a diagnosis can provide. UDN PEER is here for you, to serve and to support!
About UDN PEER
The purpose of the UDN Participant Engagement and Empowerment Resource (PEER) is to support participants and family members in part by creating and sharing resources, and to provide the participant and family perspective on UDN research goals and participant experience. The PEER provides a post-UDN visit voice. Our goal is to advocate for participants, improve the participant experience, get the word out about the UDN, and facilitate interactions between participants and the UDN.
If you have completed the UDN clinical evaluation and you would like to connect with other participants and family members, please join the UDN Facebook group by searching “UDN Families – Undiagnosed Diseases Network” on Facebook.