I am very sorry to report that we’ve had to pull out of Digestive Disease Week this year.
Last year was our first time to attend this amazing event, and it was long overdue. Although severe bowel issues only affect between 15 to 20 percent of those with HPS, for those of us with bowel disease, it can make a major impact on your life – even when it’s mild as mine is now.
Over the years we’ve had to set outreach priorities. We’ve spent money on outreach to lung doctors and researchers first because most HPS’ers with types 1, 2 and 4 pass away from the pulmonary fibrosis of HPS and not the bowel disease. While the gut issues can make you down right miserable and incredibly ill at times, we don’t generally die of bowel disease.
Several years ago a protocol to study the bowel disease of HPS was opened at NIH. We were extremely hopeful about it as we hoped it would not only be a way to gain more understanding of this aspect of HPS, but it would be a way for some patients to obtain much needed treatment.
The protocol proved difficult. The exempting criteria were very stiff. The researchers also wanted to see patients with active disease; however, HPS’ers with very active disease need to be treated. Because many bleed so, they can’t wait several weeks to get into the NIH before something must be done. It was an added complication for the researchers.
So, right now very little research is being done on the bowel disease of HPS (which very closely resembles Crohn’s disease). I can’t help but wonder if there’s a major clue to HPS lurking in our guts just waiting for some ambitious investigator to figure it out.
First, however, they need to know the syndrome even exists. Then they need to find funding for research. Currently, we don’t have funds to entice them with a nice grant.
We were saddened to find at last year’s Digestive Disease Week that there was not a single abstract, poster or session mention of HPS as a cause of bowel disease. Not one.
This outreach is needed badly.
We started to make some headway last year. We found a researcher who has HPS mice with bowel disease (something that’s been much needed.)
This year, however, like so many non-profits, our fundraising is down. As we look ahead at upcoming fundraisers, what we guess they might yield etc. we estimate we’ll have to raise an additional $60,000 to $70,000 from new sources just to maintain our current efforts – not even to expand them.
We simply have to make budget cuts.
Many of our other outreach efforts for the year either already have a significant investment made that we don’t want to lose, or are coupled with additional commitments that cannot be broken.
I’m sure other cuts will be forthcoming, although from where I’m not sure.
I’m choosing to focus on where our minor miracle – the money – can be found.
Last year was our first time to attend this amazing event, and it was long overdue. Although severe bowel issues only affect between 15 to 20 percent of those with HPS, for those of us with bowel disease, it can make a major impact on your life – even when it’s mild as mine is now.
Over the years we’ve had to set outreach priorities. We’ve spent money on outreach to lung doctors and researchers first because most HPS’ers with types 1, 2 and 4 pass away from the pulmonary fibrosis of HPS and not the bowel disease. While the gut issues can make you down right miserable and incredibly ill at times, we don’t generally die of bowel disease.
Several years ago a protocol to study the bowel disease of HPS was opened at NIH. We were extremely hopeful about it as we hoped it would not only be a way to gain more understanding of this aspect of HPS, but it would be a way for some patients to obtain much needed treatment.
The protocol proved difficult. The exempting criteria were very stiff. The researchers also wanted to see patients with active disease; however, HPS’ers with very active disease need to be treated. Because many bleed so, they can’t wait several weeks to get into the NIH before something must be done. It was an added complication for the researchers.
So, right now very little research is being done on the bowel disease of HPS (which very closely resembles Crohn’s disease). I can’t help but wonder if there’s a major clue to HPS lurking in our guts just waiting for some ambitious investigator to figure it out.
First, however, they need to know the syndrome even exists. Then they need to find funding for research. Currently, we don’t have funds to entice them with a nice grant.
We were saddened to find at last year’s Digestive Disease Week that there was not a single abstract, poster or session mention of HPS as a cause of bowel disease. Not one.
This outreach is needed badly.
We started to make some headway last year. We found a researcher who has HPS mice with bowel disease (something that’s been much needed.)
This year, however, like so many non-profits, our fundraising is down. As we look ahead at upcoming fundraisers, what we guess they might yield etc. we estimate we’ll have to raise an additional $60,000 to $70,000 from new sources just to maintain our current efforts – not even to expand them.
We simply have to make budget cuts.
Many of our other outreach efforts for the year either already have a significant investment made that we don’t want to lose, or are coupled with additional commitments that cannot be broken.
I’m sure other cuts will be forthcoming, although from where I’m not sure.
I’m choosing to focus on where our minor miracle – the money – can be found.
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