UDN

Solving Medical Mysteries
Through Team Science

UDNF PEER

What we do

The Undiagnosed Diseases Network Foundation (UDNF) Participant Engagement and Empowerment Resource (PEER) is made up of patients and family members who have participated in the UDN. UDNF PEER members work with UDN researchers to improve the participant experience, connect families, and share the UDN with others. A primary goal of the UDNF PEER group is to provide resources and support for UDN patients and families across the country. If you are a current UDN patient or family member, consider joining our UDN Patients and Families Facebook group or follow us on Twitter and Instagram.

Contact us

We are here for you! If you have questions, concerns, or comments, or just want to connect with other UDN patients and families, please reach out to us by email at info@udnf.org.

Newsletter

Sign up for the newsletter here.

The UDNF PEER group publishes a quarterly newsletter for patients and families in the UDN. The newsletter includes patient and family stories, updates on UDNF PEER activities and the UDN, and resources tailored to the UDN community’s needs. Check out our most recent version here or our archive of previous newsletters here.

Events

Upcoming events

UDNF PEER Presents: Book Launch Lecture – Normal Broken with Kelly Cervantes – January 26, 2024 (12-1 PM ET)

Join our mailing list for event reminders!

Past events

UDNF PEER Book Launch: Normal Broken

UDNF PEER Presents: We are Family – Strategies and resources to help family members living with an undiagnosed/ultra-rare patient

Rare Disease Congressional Caucus Briefing – September 14, 2023 – see 42:38 for Sarah Marshall’s address

UDNF PEER Presents: The Genome Odyssey Book Launch with Dr. Euan Ashley

UDNF PEER “Tell Me More” Lecture Series: Dr. Matthew Might

Radio Health Journal: Undiagnosed Mystery Diseases

UDNF PEER “Tell Me More” Lecture Series: Sanath Kumar Ramesh

UDNF PEER “Tell Me More” Lecture Series: Dr. Anastasia Wise

UDNF PEER “Tell Me More” Lecture Series: Dr. Eric Green

About us

Stephanie Tomlinson (UDNF PEER co-chair) has advocated for her son and others like him for over 20 years. She has been certified in the program Partners in Policymaking and seated on numerous committees surrounding early childhood special education and early detection. Recently, Stephanie was the Patient Support Coordinator for MitoAction. As the first call for help, Stephanie answered calls from patients, caregivers, and care providers looking for support and resources regarding Mitochondrial Disease. She hosts a bi-weekly podcast, Energy in Action, which focuses on the storytelling of patients with rare diseases, and experts in the field discussing their research. She is passionate about people having a voice in their care and strongly urges people to use their voices. It is the experience of those who are battling the disease that holds the answers to treatment.

Jessica Swanson (UDNF PEER co-chair) is the founder and CEO of Summit Health Services Inc., an Applied Behavior Analysis (ABA) company that operates across the U.S. in 14 locations. As a Board Certified Behavior Analyst (BCBA), Qualified Behavior Analyst (QBA), Licensed Behavior Analysis (LBA), and Certified Autism Specialist (CAS), she sits on the QABA (Qualified Applied Behavior Analysis) Board of Directors. Jessica is the founder and CEO of Redpoint Consulting Inc. which manages small start-up companies specializing in professional training. She developed www.ABATrainings.net which is both a QABA and BACB approved CEU and coursework provider. She is also an advisor to Pathfinder Health, a milestone tracking platform. In addition to her work in behavior analysis, Jessica is the co-chair of the UDNF PEER for her work in supporting the community of rare diseases. Jessica is married to an active duty officer, Mark, and has two children, Isla Grace (11) and Henry (9). She resides in Huntsville, Alabama.

Sarah Marshall resides in Minnesota with her four daughters, her youngest finally received a diagnosis in June 2021 after a 10+ year diagnostic odyssey. Outside of personal and professional advocacy, she likes to run, kayak, and adventure outdoors.

Kara Anderson lives in Charlottesville, VA. She is very grateful to the UDN. After being undiagnosed for years, she was given a conclusive diagnosis at the Duke site in 2018. She looks forward to celebrating with present and future UDN participants who get closer to and achieve a diagnosis through this instrumental program.

Christine McGarvey and her daughter, Brigid (pictured), live in Springfield, PA. Both Christine and her daughter have been participants in the UDN since late 2021 and have been working with the CHOP site. Christine has been on a long diagnostic odyssey and at age 3 her daughter began her own parallel diagnostic odyssey. Christine is very passionate about advocating for those with rare/undiagnosed diseases since both she and her daughter are equally affected. Christine is the Pennsylvania volunteer state ambassador for the National Organization of Rare Diseases (NORD). Although still undiagnosed, participating in the UDN program has taught Christine that storms do not last forever. She is very grateful that the UDN recognized the uniqueness of her and her daughter just like a double rainbow in the sky.

Nikki Patrick lives in the suburbs of Chicago with her husband, Josh, and 3 children, Grace (9), Brendan (7), and Meredith (5). Nikki became involved in the world of rare and undiagnosed diseases after the birth of her 4th child, Felicity. Felicity battled a relentless disease during her short 21 months before she passed away in December 2020. She was enrolled in the Undiagnosed Diseases Network at Washington University in St. Louis and remains undiagnosed. Nikki remains hopeful that Felicity will one day have a diagnosis. Nikki is passionate about advocating for families like hers and joining parents on their undiagnosed journey. 

Casey Robertson Ed.S lives in Mississippi with her husband and daughter Kylie. Kylie, now 17, has been a part of the UDN since August of 2022 and she has not had a diagnosis as of yet. We have been on the journey for a diagnosis since she was about 3 years old. Casey works in the field of blindness through the Professional Development Research Institute on Blindness at Louisiana Tech University. Casey loves everything about advocacy, gaining services for students that are not being educated adequately, and helping families in need. Outside of the full-time job of being a mother, managing health care for her daughter, and her work at the university and advocacy. Casey loves to kayak, read, and ride her bike.

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