At the 2025 PURA Conference, we announced the formation of a new group, GrandPOPS for any grandparent of a child with PURA Syndrome.On September 27, we welcomed a fantastic group of grandparents for the first-ever GrandPOPS Meet-up — held virtually and filled with heartwarming connection, shared stories, and mutual support. These dedicated grandparents opened up about their experiences with their Perfectly PURA grandchildren, discussing the joys and challenges of supporting children with special needs. A common thread was their deep love and unwavering commitment to advocating for their grandchildren and families.
Many shared how hard it can be to watch loved ones navigate the journey of raising a child with a rare condition — especially one as little-known as PURA Syndrome. With PURA Syndrome Awareness Day coming up on October 23, the GrandPOPS group is energized to raise awareness and spread the word within their communities.
📅 Mark your calendars: The next GrandPOPS meet-up is already in the works for early 2026 — and you won’t want to miss it!
📣 Stay tuned: A brand-new GrandPOPS Facebook page will be launching soon.
💡 Know a proud grandparent? Encourage them to join this growing, supportive community by signing up on the PURA Syndrome Foundation website here.
Grandparents often have a bit more time and a lot of heart — and they’re ready to help champion the PURA cause!