Grandparent Outreach
Supporting You as You Support your PURA Perfect Grandchild
Welcome Grandma and Grandpa!
(a/k/a Nana, Pappa, Gran, Gramps, Granny, Grandad, Nonna, Nonno, Oma, Opa, Abuela, Abuelo, Babcia, Dziadek,Grand-mere, Grand-pere, Baba, Gigi, Yaya, Pappoús, etc.)
I’m Kris, and I’m “Grandma” to the sweet and spirited little Hattie. In 2024, at just 18 months old, Hattie was diagnosed with PURA Syndrome. It was a real shock for all of us, but I have to say—Hattie’s strength and resilience have been nothing short of inspiring. She’s already hit so many milestones as she tries her best to keep up with her energetic four-year-old brother, Hayes.
I’m lucky enough to live just five minutes away from Hattie, so I get to be a hands-on part of her journey. I help by taking her to her weekly physical and occupational therapy appointments whenever I can. Now that I’ve recently retired, I have more time to support Hattie, her family, and the PURA Syndrome Foundation. It’s truly a joy to be part of this community, and I hope you will join us!
You may not have planned for this journey, but your love, wisdom, and steadiness make a world of difference. Thank you for being here. Your presence matters more than you know. If you have any questions, please contact me at grandpops@pura-syndrome.org.
You Are Not Alone
Becoming the grandparent of a child with special needs can bring a mix of love, concern, and uncertainty. Whether you’re near or far, deeply involved or just learning how to help — this space is for you.
Your Role Matters
As a grandparent, your support can mean the world:
- A listening ear for your adult children
- A steady presence for your grandchild
- A voice of love and advocacy in your family
We’re here to help you grow in confidence and compassion.
Join Our Community!
Connect with other grandparents who understand:
- Biannual Zoom Meet-ups
- Emails with tips, stories & inspiration
- Private Facebook Group for support & questions
Click the link below to join our email list to stay up to date on all of our Grandparent offerings and feel free to email us if you have ideas or are interested in helping out. Scroll down the page to see our Grandparent resources below!
Grandparent Meet Ups
We will begin to offer PURA Grandparent meet ups, beginning in the Fall, please check back for details.
See the dates and times (with time zones) below, zoom links and more information coming soon! Please sign-up for our email list to ensure you receive our updates.
Resources
Online Articles
Books
Coming soon!
Films
Take Me Home – 2023 Short Film screened at 2023 Sundance Festival
The strength of “Take Me Home” lies in its exploration of the strained relationship between Anna, who has Cognitive/Developmental Disability and her sister, Emily. Faced with the profound loss of their mother, the siblings are compelled to confront their disconnection and the importance of meaningful communication.
The Black Balloon – 2008
All Thomas wants is a normal adolescence but his autistic brother, Charlie, thwarts his every opportunity. Will Thomas, with the help of his girlfriend, Jackie, accept his brother?
Need Support?
Have questions or just need to talk? We’re here to help.
Please click the link below to email us!