Pictured: Donna Appell and Lisa Young on the show floor at the American Thoracic Society.
Last week we had big news in the HPS community, and I’ve just been too swamped with work and getting ready for conference to blog about it. But, as blog entries go, there couldn’t be a bigger development in our battle to the cure.
For the first time, the HPS Network has dipped our toes into the pool of funding medical research in a substantive way. (We have had two projects before this – a small grant to a medical student to develop a bleeding history survey, and we contributed $25,000 to keep Dr. White’s electron microscope in business so he could continue to diagnose HPS.)
The HPS Network is partnering with the American Thoracic Society (ATS) to fund a two-year grant. We’re putting up $50,000 over two years, and so is ATS. And, last week it became official. Dr. Lisa Young of the University of Cincinnati hospital is our very first grant recipient! Go Dr. Young!!!!
And now the back story…
Four years ago Donna Appell, and I think it was Marie DelVecchio (another HPS mom) attended a meeting of the ATS. Donna found out that ATS would accept scientific posters from patient advocate groups, so we entered one. Without a couple thousand dollars to spend on a booth on the trade show floor like the other groups, Donna and Marie sat on the floor and in borrowed chairs by their poster all week. If you’ve ever been to a scientific meeting with a poster session before, you might appreciate this image. This just isn’t done. But, there isn’t anything we won’t do for a cure – and if that’s what it takes to get noticed, then that’s what we’ll do.
It worked.
The other patient groups were so impressed with Donna and Marie’s efforts that they invited Donna to serve on the Public Advisory Roundtable of the ATS. This was a huge step on our journey. It meant that we’d have a chance to get noticed in the lung world. It meant that we had the chance to get to know some of the nation’s leading patient advocates and learn from their wisdom. It meant we’d get a seat at the table with the “big boys” like the American Lung Association.
The next year we scraped together the money for a booth on the show floor. As Donna put it, “We got rug.” The meeting was in Orlando so Elsie and her brother Benny joined us. I spoke at a symposium about HPS to several thousand doctors. It was a great week. It’s when I really got to know Elsie and Benny for the first time since we had hours together in the booth. We also had a dinner for families in the Orlando area. For a disorder as ultra rare as HPS, there are 14 families that I can think of off the top of my head in the greater Orlando area. Orlando has the third largest Puerto Rican population outside of the island its self. Chicago is second, and New York is first.
The next two years ATS was held in San Diego. We had our booth. I gave presentations about HPS and the challenges an underserved population has accessing medical care, as well as a presentation about the value of family involvement in health care outcomes. Donna worked her charm magic getting to know all the key people that might be able to help us. Through her efforts, we became aware of a matching grant program to fund research.
The only trouble was we needed to have a minimum of $25,000 a year to put up – and for an organization like ours with tenuous fundraising, we wanted to be sure the money was in the bank ready to go before we took on such a commitment.
God provides.
In stepped the Molter family who are amazing fundraisers. They, in cooperation with the community of Fort Wayne, Indiana, raised the necessary funds. So, in May we let ATS know we had our money ready – we were ready to go!
The bureaucratic wheels began to turn. We expected that in January a notice would go out that the money was available for grants, and that maybe in a year we’d have a fundable proposal.
God provides.
Dr. Lisa Young is young doctor doing mouse research (in addition to her regular duties). She’s become interested in HPS research and this year published a very interesting paper. She made a grant application through the typical ATS channels and it came to the attention of the committee charged with vetting applications for our grant. They were so impressed with her proposal that they decided we shouldn’t waste another year to fund it. They decided to go ahead and award the funds to Dr. Young so that she can get started.
This is truly exciting.
It’s exciting that we’re able to begin to fund some research. It’s exciting that Dr. Young’s proposal showed up when it did, and it’s exciting that we’ve just gained back another year in the race to the cure.
For the first time, the HPS Network has dipped our toes into the pool of funding medical research in a substantive way. (We have had two projects before this – a small grant to a medical student to develop a bleeding history survey, and we contributed $25,000 to keep Dr. White’s electron microscope in business so he could continue to diagnose HPS.)
The HPS Network is partnering with the American Thoracic Society (ATS) to fund a two-year grant. We’re putting up $50,000 over two years, and so is ATS. And, last week it became official. Dr. Lisa Young of the University of Cincinnati hospital is our very first grant recipient! Go Dr. Young!!!!
And now the back story…
Four years ago Donna Appell, and I think it was Marie DelVecchio (another HPS mom) attended a meeting of the ATS. Donna found out that ATS would accept scientific posters from patient advocate groups, so we entered one. Without a couple thousand dollars to spend on a booth on the trade show floor like the other groups, Donna and Marie sat on the floor and in borrowed chairs by their poster all week. If you’ve ever been to a scientific meeting with a poster session before, you might appreciate this image. This just isn’t done. But, there isn’t anything we won’t do for a cure – and if that’s what it takes to get noticed, then that’s what we’ll do.
It worked.
The other patient groups were so impressed with Donna and Marie’s efforts that they invited Donna to serve on the Public Advisory Roundtable of the ATS. This was a huge step on our journey. It meant that we’d have a chance to get noticed in the lung world. It meant that we had the chance to get to know some of the nation’s leading patient advocates and learn from their wisdom. It meant we’d get a seat at the table with the “big boys” like the American Lung Association.
The next year we scraped together the money for a booth on the show floor. As Donna put it, “We got rug.” The meeting was in Orlando so Elsie and her brother Benny joined us. I spoke at a symposium about HPS to several thousand doctors. It was a great week. It’s when I really got to know Elsie and Benny for the first time since we had hours together in the booth. We also had a dinner for families in the Orlando area. For a disorder as ultra rare as HPS, there are 14 families that I can think of off the top of my head in the greater Orlando area. Orlando has the third largest Puerto Rican population outside of the island its self. Chicago is second, and New York is first.
The next two years ATS was held in San Diego. We had our booth. I gave presentations about HPS and the challenges an underserved population has accessing medical care, as well as a presentation about the value of family involvement in health care outcomes. Donna worked her charm magic getting to know all the key people that might be able to help us. Through her efforts, we became aware of a matching grant program to fund research.
The only trouble was we needed to have a minimum of $25,000 a year to put up – and for an organization like ours with tenuous fundraising, we wanted to be sure the money was in the bank ready to go before we took on such a commitment.
God provides.
In stepped the Molter family who are amazing fundraisers. They, in cooperation with the community of Fort Wayne, Indiana, raised the necessary funds. So, in May we let ATS know we had our money ready – we were ready to go!
The bureaucratic wheels began to turn. We expected that in January a notice would go out that the money was available for grants, and that maybe in a year we’d have a fundable proposal.
God provides.
Dr. Lisa Young is young doctor doing mouse research (in addition to her regular duties). She’s become interested in HPS research and this year published a very interesting paper. She made a grant application through the typical ATS channels and it came to the attention of the committee charged with vetting applications for our grant. They were so impressed with her proposal that they decided we shouldn’t waste another year to fund it. They decided to go ahead and award the funds to Dr. Young so that she can get started.
This is truly exciting.
It’s exciting that we’re able to begin to fund some research. It’s exciting that Dr. Young’s proposal showed up when it did, and it’s exciting that we’ve just gained back another year in the race to the cure.
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