2011 Award Winner Profile

Donna Lain

Creator of Kari Bags

Kari BagInspired by Daughter

I submitted an application for the 2011 Tom Lantos Innovation in Community Service Awards program to be able to make Kari Bags. My daughter, Andrea, and I had come up with the idea for Kari Bags in honor and memory of my youngest daughter, Kari Beth Lain (9/9/1982 – 5/27/2003). Kari had PH secondary to lupus.

The primary goal of Kari Bags is to provide an outlet for children diagnosed with pulmonary hypertension. The bags provide educational material about PH and are filled with age-appropriate toys, games and stress reliever items. The idea was that Kari Bags would allow kids to have stuff to play with when they are required to be in the hospital for procedures and tests or admitted for infections or line problems.

When Andrea and I were notified that we had received a grant to make the bags, we started working with an artist to design the outside of the bag. PHA sent information about its programs for us to put in the bags. We decided on three age groups: ages 3 to 6, ages 7 to 11, and ages 12 and up. We had the bags printed, and through extensive research and searching through catalogues, along with Andrea’s knowledge from her work with summer day camps and after school programs, we were able to include 10 items in each bag for each age group.

It was a very exciting day when we invited family and friends to come together with us to fill 750 bags, 250 for each age group. Everyone was very enthusiastic and thought it was a great legacy and a fun way to honor Kari’s memory.

Then we started marketing the bags so we could get them into the hands of children with PH. We sent a letter to the clinic coordinator for each PH center and to the support group leaders for the pediatric support groups. The bags were also featured at the PH Professional Network Symposium at the end of September. To date, we have received orders from five PH centers and have shipped out 150 bags. We are very grateful to have been given this award and hope to fill more orders very soon.

I am very thrilled to have been able to put together the Kari Bags. We would not have been able to carry out this idea without the 2011 Tom Lantos Innovation in Community Service Awards program. It is very exciting to be able to provide these bags to pediatric patients in Kari’s memory. Kari was very passionate about hospitals and care, and I believe she would be pleased that because of this project, kids are getting some joy and fun while undergoing medical procedures. To be able to see the Kari Bags filled and shipped is priceless to me and a wonderful legacy to such a special person.

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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.