Lynn

 

 NIH is a government program so money to them won't be needed.... BUT as a former participant in the NIH study... what WOULD be MOST useful is funding to the families of the kids with CAH for transportation costs and food stipends.

 One of the several reasons we decided to drop out of the NIH study was the cost of airline transportation. NIH will pay for the child and ONE parent. We felt being a FAMILY was so important with all they do. Not having to worry about how to pay for the other parent or any other children would be such a relief to many. For example, if we were still in the program,  I would have to buy an airline ticket for my husband and  for the baby,Sara. NIH would argue that husband and Sara can stay home. Wrong. Sara is a baby and NEEDS her momma. Brayden would need me too so I would need to go with him. I have a baby and would need my husband. Plus, we are a family and do things as a WHOLE family.

 NIH also provides a stipend for the ONE parent to buy food. What they give is hardly enough for food each day. There is added cost for the additional family members. All this stuff adds up fast when the money really isn't there to begin with.

 The donation would not have to go directly to the family. There are always concerns about getting ripped off. The airline ticket could be paid for by the organizations funds without going through the family. For food, they could provide the family with a gift card to the local grocery store. Another great idea would be to somehow take care of the car parking fee- if needed - from the family home town airport. NIH will provide shuttle service from the airport local to them. Meanwhile your car is parked for several days at the other airport. Again those hidden little costs add up.

 

 Another thought...  How about if this organization paid for the medicine a CAH child requires. Thinking again about these hidden costs. Even if you have insurance, often there is a co- pay. Same for all the office visits a CAH child goes to.   

 What if this organization flipped the bill for an educational brocure.... or for the information packets that another person thought of.

 What if this organization paid for a couple of the families to go to the Magic  convention held each year. Maybe it could be a random drawing or something.  

 

How's that?  <smile>

 

 

Susan