Lately I feel as though I’m probably getting on everyone’s nerves. I feel like all I ever post about, either here or Facebook or on the listservs, is fundraising. If I’m sounding like a broken record, I’m sorry. I can’t help it.
This year is a special kind of year in HPSland.
Sometimes I look around at the needs in our community – the needs of our families, of those with HPS and of the Network – and it all seems overwhelming. How on Earth are we going to get it all done? I sometimes feel as though we’re barely scratching the surface and there’s so much more to do.
I feel like conference for many is going to be especially important this year. We’re all a little tender in the spirit from the closing of the drug trial. We need to be with our “family” to console one another in person as well as to motivate everyone to soldier on to the next phase of our journey. None of us can do it alone. We need each other.
We also need to have a strong turn out for conference to send the message to our researchers that we’re still here, we’re still strong, and we’re gearing up for the next stage. We need to show them by our spirit that we are not defeated and that we still love and appreciate them. We need to show them that our ranks are growing, and we need a cure!
Our Hundred People Search is going very well. We have so many new members, and they could benefit so much by the conference experience. It’s the best place to meet other patients as well as the doctors. For so many, it’s an experience that totally changes their perspective about their diagnosis. For the parents of smaller HPS’ers, it’s such a valuable educational experience that trains them to be better advocates for their children.
Despite all that we do to try to keep the cost of conference down, it still isn’t a cheap trip for most families. There’s hotel and airfare and incidentals. Most can’t do it alone. We never have enough funds to bring everyone together that needs to come.
Some families have fundraisers and the money they raise helps to bring them to the conference.
I’m trying to encourage others to ask for additional help from community organizations like the Lions Clubs. It would be especially helpful this year as our fall fundraising is down. Rain has not been our friend at several fundraisers.
I’m happy to even write a letter for you if you’re an HPS’er of CHS’er who needs help finding funds for conference. I want you there. I just need you to be willing to reach out and ask.
This year is a special kind of year in HPSland.
Sometimes I look around at the needs in our community – the needs of our families, of those with HPS and of the Network – and it all seems overwhelming. How on Earth are we going to get it all done? I sometimes feel as though we’re barely scratching the surface and there’s so much more to do.
I feel like conference for many is going to be especially important this year. We’re all a little tender in the spirit from the closing of the drug trial. We need to be with our “family” to console one another in person as well as to motivate everyone to soldier on to the next phase of our journey. None of us can do it alone. We need each other.
We also need to have a strong turn out for conference to send the message to our researchers that we’re still here, we’re still strong, and we’re gearing up for the next stage. We need to show them by our spirit that we are not defeated and that we still love and appreciate them. We need to show them that our ranks are growing, and we need a cure!
Our Hundred People Search is going very well. We have so many new members, and they could benefit so much by the conference experience. It’s the best place to meet other patients as well as the doctors. For so many, it’s an experience that totally changes their perspective about their diagnosis. For the parents of smaller HPS’ers, it’s such a valuable educational experience that trains them to be better advocates for their children.
Despite all that we do to try to keep the cost of conference down, it still isn’t a cheap trip for most families. There’s hotel and airfare and incidentals. Most can’t do it alone. We never have enough funds to bring everyone together that needs to come.
Some families have fundraisers and the money they raise helps to bring them to the conference.
I’m trying to encourage others to ask for additional help from community organizations like the Lions Clubs. It would be especially helpful this year as our fall fundraising is down. Rain has not been our friend at several fundraisers.
I’m happy to even write a letter for you if you’re an HPS’er of CHS’er who needs help finding funds for conference. I want you there. I just need you to be willing to reach out and ask.
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