Donna Appell, Founder and President of the Hermansky-Pudlak Syndrome Network, has been busy these past few weeks too! I know everyone knows Donna works hard, and that we all appreciate her – but sometimes I wonder if everyone realizes just how hard she works on our behalf.
Not only is she caring for Ashley and her two elderly parents, but in the past two weeks she’s been hop scotching across the country to attend various medical meetings of critical importance to keep the research on HPS going.
First she was off to the public advisory meeting for the Heart, Lung and Blood Institute at the National Institutes of Health. You would think that since HPS is mostly a blood and lung disease, we’d be a natural fit with this institute. But, actually, our cause was taken on years ago by the genetics branch at NIH.
Even so, as our research grows and our drug trials continue, we need the attention of the Heart Lung and Blood Institute. Serving on a public advisory board not only gets the name of HPS out there, but it helps patient groups understand more about the institute, how it works, who the decision makers are etc. It’s very important that we participate as an organization there, and Donna’s the person that can represent us best.
Next Donna flew home for a local meeting with Stand Up for Ileitis and Colitis Youth. This organization has been important for our outreach, important for Ashley and frankly, they’ve been very, very good to us over the years. They provide a grant to help pay for some of the food and beverage expenses at the annual HPS Family Conference. Donna also helps them plan their conference. (She’s getting to be the master conference planner!)
The weekend brought no rest for Donna as she organized the Oysterfest fundraiser (see earlier post).
And, then she was off to the meeting of the American Academy of Chest Physicians. Again, this is an opportunity to educate pulmonologists about HPS. Too often people with HPS are diagnosed as having idiopathic pulmonary fibrosis. In fact, there’s nothing idiopathic about it and knowledge of the possible bleeding complications associated with HPS can become vital to a person’s treatment plan.
While at that meeting, Donna took her position as incoming President of the Public Advisory Roundtable of the American Thoracic Society. It’s a position that gives HPS a high profile in the lung disease community and I think will open a lot of doors for HPS research. It’s also very wise for us to be part of coalitions trying to raise awareness and funding for research on all lung diseases.
Now, Donna’s finally home. She’s working away, but she’s home. And since being at home doesn’t involve an airplane (Donna hates to fly) she’s a happy camper!
Kudos to Donna for all her hard work!!!
Not only is she caring for Ashley and her two elderly parents, but in the past two weeks she’s been hop scotching across the country to attend various medical meetings of critical importance to keep the research on HPS going.
First she was off to the public advisory meeting for the Heart, Lung and Blood Institute at the National Institutes of Health. You would think that since HPS is mostly a blood and lung disease, we’d be a natural fit with this institute. But, actually, our cause was taken on years ago by the genetics branch at NIH.
Even so, as our research grows and our drug trials continue, we need the attention of the Heart Lung and Blood Institute. Serving on a public advisory board not only gets the name of HPS out there, but it helps patient groups understand more about the institute, how it works, who the decision makers are etc. It’s very important that we participate as an organization there, and Donna’s the person that can represent us best.
Next Donna flew home for a local meeting with Stand Up for Ileitis and Colitis Youth. This organization has been important for our outreach, important for Ashley and frankly, they’ve been very, very good to us over the years. They provide a grant to help pay for some of the food and beverage expenses at the annual HPS Family Conference. Donna also helps them plan their conference. (She’s getting to be the master conference planner!)
The weekend brought no rest for Donna as she organized the Oysterfest fundraiser (see earlier post).
And, then she was off to the meeting of the American Academy of Chest Physicians. Again, this is an opportunity to educate pulmonologists about HPS. Too often people with HPS are diagnosed as having idiopathic pulmonary fibrosis. In fact, there’s nothing idiopathic about it and knowledge of the possible bleeding complications associated with HPS can become vital to a person’s treatment plan.
While at that meeting, Donna took her position as incoming President of the Public Advisory Roundtable of the American Thoracic Society. It’s a position that gives HPS a high profile in the lung disease community and I think will open a lot of doors for HPS research. It’s also very wise for us to be part of coalitions trying to raise awareness and funding for research on all lung diseases.
Now, Donna’s finally home. She’s working away, but she’s home. And since being at home doesn’t involve an airplane (Donna hates to fly) she’s a happy camper!
Kudos to Donna for all her hard work!!!
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