Special Events Stories & Photos

August 22, 2008
Painting a Stroke of PHenomenal Hope

PH Teen Inspires Community and Raises Thousands for PHA

Melissa and Lauren JohnsonUsing her passion for art to make a difference in the fight against PH, Lauren Johnson, a 16-year-old PH patient, came up with the idea of organizing a "Painting a Stroke of PHenomenal Hope" event where donated art could be auctioned. She designed the logo for the event, which her mother Melissa is sporting in the picture here with Lauren.

Before the event Lauren did a lot of publicity and awareness-raising in her community. She obtained press coverage in three newspaper articles and raised $3,000 in sponsorships. Last weekend, she attracted 250 attendees to her art auction event in Edmond, Okla., which included carnival games, square dancers, and a bake sale. At last count, she had raised $11,000 for PHA, but checks are still coming in.

Always thinking beyond herself, Lauren did not organize the event in honor of her own struggle with PH, but in honor of her 11-year-old PHriend Julian Willis (who she met at the 2008 PHA Conference and has the same PH specialist Dr. Dunbar Ivy) and in memory of a local PHriend Katie Hill who passed away in December. In fact, just a week before hosting this large event she traveled to Colorado to attend a House Party in honor of Julian.

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NORD

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.