Wednesday, October 28, 2015

Moving the cure forward

The fall and Christmas season are our biggest fundraising times of year. That is true for a lot of non-profits. Maybe people are in the giving spirit. Maybe they are thinking about tax deductions at the end of the year. Whatever it is, thank God for the donors, and thank God for the HPSers and supporters that help us with fundraisers! There will be no cure without all of you!

The HPS Network is growing and evolving. The opportunities for us out there to get closer to treatments, and a cure, are so many that we can’t even take advantage of them all. But, our budget has to keep up.

Soon we will be facing some hard choices. We are at a point that we need a full time nurse who is able to work on center recruitment and families who need help. Donna just can’t do it all. All of our part-time staff works for way, way, way under market value for their talents and positions. We are so lucky to have people so vested in our cause, and for whom making a difference is so important, that they are willing (or able) to work for so little. Still, we can’t keep moving forward as an organization relying on people able to work for peanuts. We need to pay enough that someone could actually pay their basic bills and work for us.

Right now, looking at our budget, the only way I see us able to do this is if we do not fund another American Thoracic Society grant. That is sooooo sad! These grants have done so much to move the research. They have had a tremendous return on investment!

Consider that the first junior researcher we funded with $30,000 a year for two years was Dr. Lisa Young. She turned her initial research that we helped fund (matched by the American Thoracic Society) into a $770,000 grant, and then a $2 million NIH grant. She is now leading the project to open the HPS research centers. Talk about a bargain!

The problem is we want to turn all of this research into clinical trials at some stage. We need to move it from the lab to trials and then to real treatments for real HPSers. If we don’t get some help in the office, we simply aren’t going to be able to do that. We won’t be able to take the investments made before now and turn them into real results for patients someday.

I blog about this only because in this fundraising season, I want us all to understand what choices we face. I want us all to understand how important fundraising is, and how we need everyone’s help! How much you raise isn’t important. It is a group effort.

If we don’t want to lose the research engine that the ATS grants have been, but still keep us moving forward toward another trial, then we need to increase our budget next year by at least $80,000.


The reality is HPS is rare. The people who care about curing it are the ones affected by it. It is up to us. It is on our hands. Please, help us keep moving forward to the cure!

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