PEER Team
UDNF PEER was initially formed under the umbrella of the UDN in 2017 as a patient advisory group to the UDN and its sites. Over the years, it has grown from an insular patient advisory group with the UDN to an influential force towards the sustainability of the UDN and the inception of the UDNF, playing a dynamic role in supporting UDN participants while also considering the broader needs of the undiagnosed community. UDNF PEER members are active in publication of the UDNF PEER newsletter 3 times a year, sponsoring the Tell Me More Lecture Series, engaged with the UDN Coordinating Center and sites as issues arise, and participate in UDNF Board Work Groups in order to support the UDNF mission: to improve access to diagnosis, research and care for all individuals living with an ultra rare or undiagnosed condition.
UDNF PEER has four active councils including:
Support Council
The Support Council focuses on the patient experience and the services that meet individual needs. This council provides a feedback loop on patient navigation, identifying ways to expand meaningful resources, and strengthen programs that offer direct support to individuals and families on their diagnostic journey.
The Support Council meets on the 4th Tuesday of every month at 4:00 p.m. Eastern. Join the Support Council Monthly Meetings – Register Today
Engagement Council
The Engagement Council works to identify how best to build connection across the undiagnosed community. Members help shape outreach efforts, design community-building activities, and create pathways for more people to participate and feel a sense of belonging.
The Engagement Council meets on the 2nd Thursday of every month at 1:30 p.m. Eastern. Join the Engagement Council Monthly Meetings – Register Today
Action Council
The Action Council mobilizes the community to raise awareness and drive change. This group identifies and rallies the community to realize policy and funding opportunities to improve support and outcomes for people living with rare and undiagnosed diseases. Additionally, this group will ensure that the voice of the undiagnosed is heard through awareness and community organizing activities.
The Action Council meets on the 4th Friday of every month at 11:00 a.m. Eastern. Join the Action Council Monthly Meetings – Register Today
Fundraising Council
The Fundraising Council explores creative, accessible ways to support the financial sustainability of the UDNF. Members brainstorm and implement fundraising efforts that grow our programs and expand our capacity to serve the rare and undiagnosed community.
The Fundraising Council meets on the first Monday of every month at 12:00 p.m. Eastern. Join the Fundraising Council Monthly Meetings – Register Today
PEER Team
Shannon Ackenhausen | she/her
Shannon Ackenhausen is the parent of a young child enrolled in the UDN as well as an additional NIH study. Shannon's family visited the NIH Clinical Center in 2023. Their diagnostic journey continues; however, she and her family are incredibly grateful for the expert evaluation and guidance that they have received from their NIH teams. Shannon and her family live in Michigan. Professionally, Shannon's work as an attorney has focused on access to health care and civil rights issues, including disability rights issues. She joined UDNF PEER in 2025.
Kara Anderson | she/her
Kara Anderson lives in Virginia and works at a university as a postdoctoral fellow. She was lucky enough to be given a diagnosis at the Duke site in 2018. That same year, she joined PEER. She enjoys her involvement with PEER, as the group has not only helped others, but has also helped her navigate her own condition. The trials and tribulations of a rare disease does not stop at a diagnosis, and she is grateful the UDNF offers resources for every part of this journey. Outside of PEER, she loves cooking and hanging out with her cat, Kit. She hopes one day to make Kit an influencer on Instagram so he can start contributing to the household income.
Carrie Borrello | she/her
Carrie Borrello is the Annual Giving Manager at the EveryLife Foundation for Rare Diseases. Prior to joining EveryLife, Carrie served for over a year as the Fundraising and Engagement Specialist at the Undiagnosed Diseases Network Foundation (UDNF), where she led efforts in donor engagement, community storytelling, and strategic communications. She brings a rich background as an educator, advocate, and caregiver, having spent more than two decades in public education and as the founder of her own preschool. Carrie’s passion for advocacy is deeply personal—rooted in her ongoing journey as a caregiver to her son Evan, who continues to search for answers after eight years on a diagnostic odyssey due to a demyelinating disease of the central nervous system. This lived experience has given her insight into the challenges families face when living with uncertainty, and it drives her commitment to supporting others with empathy, resources, and connection. Through her work at EveryLife and her continued involvement with UDNF, Carrie remains devoted to advancing research, access, and hope for the rare and undiagnosed disease communities.
Jennifer Glass | she/her
Jennifer Glass resides in Wilmington, North Carolina, with her husband and two children. Her family's journey into the world of rare and undiagnosed diseases began when her son, Grant, was diagnosed prenatally with underlying genetic symptoms. In June 2021, they enrolled him as an infant at the Duke University Undiagnosed Diseases Network (UDN) site. Although still undiagnosed, the UDN has helped pinpoint a potential gene of significance, identifying Grant as the only person with his genetic deletion to date. Participating in the UDN has helped establish a supportive community, built a strong care team, instilled hope, and provided an advocacy voice for Jenny. Jenny holds a Bachelor of Science in Biology from UNC Chapel Hill and a Master of Science from NC State University. She has applied her scientific training to better understand and advocate for her son's undiagnosed/rare genetic condition. Currently, she teaches middle school Biotechnology, where she works to make complex scientific concepts clear, accessible, and engaging for her students. Jenny hopes to draw upon her background in science and education, as well as her personal experiences, to support, empower, and foster communication among rare disease families, researchers and stakeholders through her involvement with PEER. In her free time, Jenny enjoys running, traveling, beachcombing, and spending time on the water with her family in their beautiful coastal community.
Paul Gober | he/him
Paul Gober recently turned 40 in May 2025 and has an extremely rare genetic mutation, SCN11A, that causes primary erythromelalgia, small fiber neuropathy, and several other medical issues. He is unable to work and is currently on disability. Because of Paul's health issues, he only leaves the house for necessities which keeps him from doing most activities or hobbies he used to enjoy. Thankfully, Paul can still enjoy live music and go to concerts. Paul has a degree in Cognitive Psychology, a second degree in Electrical Engineering Tech, and would like to pursue a degree in neuroscience. With the UDN at the NIH, Paul hopes to learn more about his condition and create protocols that improve treatment and to accurately diagnose it.
Rajshree Jadeja | she/her
Rajshree Jadeja, a mother residing in Seattle with her husband and two daughters, began her journey with UDN in 2016 while managing her older daughter Meera's autoimmune medical challenges. Over the decade she has successfully collaborated with doctors and researchers at UDN Stanford, Harvard Medical School, Duke Autoimmune Disease Clinic, UC Berkeley and Seattle Children's Hospital to diagnose Meera with a novel and rare gene mutation (discovered at UDN), followed by appropriate treatment for an ultra-rare medical condition called interferonopathy. UDN has officially added UNC93B1 gene as causation for all Meera's symptoms and contributed to the publication of a research paper on the gene. These new findings are now part of medical literature and presented in medical conferences all around the world helping many patients with similar rare diseases. With an educational background in business management, she patiently applied her data analytic and problem-solving skills, to reach her goal of diagnosis and treatment for her daughter’s condition. As part of the PEER team, she is passionate about sharing her valuable experience via advocating, problem solving and navigating unknowns for families, researchers and caregivers' communities. She works in corporate relocation and is actively involved in fundraising and community engagement activities as the President of the Rheumatology Research Guild at Seattle Children’s Hospital.
Kelly Kemper | she/her
Kelly Kemper lives in Roanoke Virginia and has a son currently in the UDN. She has served as his medical advocate over the past 4 years and hopes to help families as they too seek answers. Kelly teaches yoga, meditation and mindfulness classes and has served as a board member for various non profit organizations. She is passionate about Undiagnosed Diseases and advocacy and speaks Spanish. When she isn’t in the yoga studio she spends time with her husband and 5 children travelling, gardening and coaching girls lacrosse and field hockey.
Christine McGarvey | she/her
Christine McGarvey and her daughter, Brigid, 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 Disorders (NORD). She is also the director of the UDNF PEER Tell me More lecture series and the Book Launch Lecture series. Prior to becoming a rare disease advocate, received a master’s of science degree in Cell and Molecular Biology from the University of Pennsylvania School of Medicine. Christine was awarded a full fellowship for her graduate studies at Penn. She was also awarded a National Institute of Health grant for her graduate research into the role of Spt7 in transcription. Additionally, she co-authored H2B Ubiquitylation Acts as a Barrier to Ctk1 Nucleosomal Recruitment Prior to Removal by Ubp8 within a SAGA-Related Complex. Mol. Cell. 27, 275-288. 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 | she/her
Nikki Patrick is a mother of 4 living in the suburbs of Chicago. Nikki became involved in the world of rare and undiagnosed disease when her youngest daughter, Felicity, was born in 2019. During her 21 months of life, Felicity fought a disease that was never diagnosed and progressively took away her abilities until it took her life in late 2020. Nikki has turned her pain into passion and is very dedicated to coming alongside families in their undiagnosed and rare disease journeys. Nikki holds out hope that one day they will receive and answer for Felicity's challenges and that it will help another family avoid some of the pain and heartbreak that comes with not knowing what is slowly destroying your beautiful child. Nikki works in a therapeutic high school, enjoys watching her kids play sports and her oldest daughter play the tuba, and laughing at the antics of their cat, Poppy.
Beth Toenies | she/her
Beth Toenies lives in Florida and works as Chief Operating Officer for an international franchisor's corporate headquarters. She is mother to two kids--one of whom is a proud member of the UDN and has been since 2021. While still globally undiagnosed, she is an active advocate in the community on behalf of Isaac and other children like him. As an active-duty Navy spouse, Beth remains active in the military community as well.