Community Outreach
The Mayo Clinic PaSAGE Study Team has been busy the past few months connecting with our community partners. In April, we joined the Minnesota Chapter of the Huntington's Diseases Society of America (HDSA) in their pickle ball tournament fundraising event. Our team had a blast pickling and chatting with the amazing community at this tournament. This event was a great opportunity to meet so many community members and recruit participants for our interview study. Following this event and the completion of the interviews with our Huntington’s cohort, members of our team also participated in the Team Hope Walk led by the Missouri Chapter of the HDSA. We are so grateful we had the opportunity to continue to support the community in this way.
PaSAGE Team members and HDSA Missouri Chapter President at their Team Hope Walk in September 2024.
This July, we had fun being a part of the Slow Roll hosted by The Sickle Cell Foundation of Minnesota. This bike ride event also included a community lunch and learn which we got to table at. Learning from and with this community was a joy. In September, we reconnected with the Sickle Cell Foundation of Minnesota at their Sickle Cell-ebration of Hope event. This gala celebrated hope, strength, and unity in the fight against sickle cell disease and you could feel the inspiration at this event. These fantastic community events provided a great space to continue to meet and recruit community members for our interview study.
PaSAGE Team members Assata (Left) and Preya (right) at the Slow Roll hosted by the The Sickle Cell Foundation of Minnesota.
Community events allow us to collaborate with the societies and foundations that support patients to hear and uplift their voices. We are excited to continue fostering new and old community partnerships.
November 5th through 9th we will be at the American Society of Human Genetics Annual conference. We will have posters on the 8th from 2:30-4:30pm in Exhibit Hall F. One poster is titled "A systematic approach to community-engaged recruitment for genetics research" and the other is "Policymaking in the Real-World: Assessing Key Informant Perspectives on Prenatal Gene Editing". We would love to connect with any of you as we continue recruiting and building community relationships within the rare disease space.