Quilts Unite Support Groups Across the Country

Each of PHA’s 240 support groups are united by the drive to provide information, support, connections and hope. However, each has its own special way of operating and its own unique local feel. We love to celebrate the vibrant diversity of these local groups, and earlier this year, two support group leaders gave us a way to celebrate both our diversity and unity.

Two of our support group leaders created quilts to capture the essence of our support groups and to pay tribute to those we have lost to the disease.

Buffalo, N.Y., Support Group Leader Jaclyn Burdick created the “Laugh, Love, Hope and Peace” quilt to represent our 240 groups nationwide. Cleveland Community Group Leader Gwen Brown masterfully hand-crafted the “Memories … Just One Breath Away” memorial quilt. Pieces for each of the quilts were designed by support group leaders and group members across the country and mailed to Jaclyn and Gwen for inclusion in each quilt.

The quilts were showcased at PHA’s 10th International PH Conference this past June, and they are now lovingly displayed in PHA’s Silver Spring, Md., headquarters.

The photos below show the loving detail and handiwork of our leaders and support group members across the country.

Gwen Brown and Neeta Pai with Support Group quilt

Gwen Brown (left) shows off her creation of "Memories ... Just One Breath Away" with Neeta Pai, Rochester, Minn., support group leader, at PHA's 10th International PH Conference.


Jaclyn Burdick with support group quilt

Jaclyn Burdick (right) delivers a speech about the inspiring power of our stories to the crowded room of 170 leaders at Conference. She stands beside her quilt "Laugh, Love, Hope and Peace."

Quilt square in honor of CaitlinMany groups paid tribute to PHriends who passed away with handcrafted quilt pieces. Caitlin Barley was 10 years old and living in Alabama when she was diagnosed with PH. She and her family were thrilled to be able to attend PHA’s 2008 International PH Conference in Houston because Cate met other kids with PH. She lost her battle in 2010, but her family continues to fight in her memory.   Hershey/Harrisburg region support group quilt squareIn the Hershey/Harrisburg region of Pennsylvania, the local support group has adopted the Three Little Pigs story as its own since a past leader, Donna Caterini, used the idea of the Big Bad Wolf to raise PH awareness through a PHA Lantos Award-winning poster in 2010. Now the Three Little Pigs also represents the group on the quilt.



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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.