Scholarships for your participants/families/members

From WikiAdvocacy

In addition to reading below, also check out the Setting Up A National Conference page.

We're a small organization and our children's syndrome is rare... and our children are extremely medically fragile and developmentally disabled. That makes our organization, run by parents on a volunteer basis, fairly fragile ourselves, as it's on top of everything else.

Because the Costello Syndrome Family Network (CSFN) Board feels strongly that there be no conference fee (and so work to raise funds to ensure that), we have no further resources to provide to families. Whatever doesn't go directly toward conference expenses gets divided up for the speakers' honoraria, which never fully pays for their entire travel costs.

So, for the families, we work to help families find resources in their area. We write fundraising letters for parents to include with their child's story (with photo) and send to people or companies they designate, suggest that they send the letters to their "Christmas Card List," and contact their state's Family Voices for further resource ideas.

For airfare, we inform families of several resources (like Mercy Medical and Angel Flight) for the family to approach.

I've written up a budget sheet to help a family so they could make concrete what they would need to raise to come to our conferences.

One year, a parent (single parent with 4 children) contacted her local newspaper about her wish to go, and the paper published her story on the front page of a Sunday edition! They also set up a donation fund for her. She received so much support that she helped other families go to our conference that year. One of the best donations was frequent flyer miles.

Hope these thinking-outside-the-box ideas might help your families as well.

For the last 3 conferences, our international organization, the International Costello Syndrome Support Group (ICSSG) raised funds to be able to provide help to families with their hotel bills, on a first come, first served basis. Colin also has the families make the reservation and then he works with the hotel conference manager to pay for the bills before he leaves.

ciao, Lisa

Lisa Schoyer Chair, Costello Syndrome Research Advisory Group Research Liaison, CSFN

The National Foundation for Ectodermal Dysplasias has offered scholarships for the last 7 years. In the early years we paid hotel costs (had them master billed), waived registration fees, and gave the families a check for travel expenses. The check was equal to mileage or average airfare prices (whichever was cheaper). We gave the check to the families when they arrived at the conference. We found this to be problematic when families who said they were coming did not show up and we were stuck with paying at least their 1st nights hotel charges. Believe it or not, we had this happen on several occasions. At that point, we started asking for a credit card number when they accepted their scholarship award. We would only charge this card for the 1st nights hotel stay if they did not cancel and did not show up at the conference. This also did not work well. Many times the credit cards were declined.

We now only offer hotel reimbursement and a waiver of registration fees. We ask that each family make their own hotel reservations at our conference hotel. We reimburse them for the hotel when they arrive at the conference. This seems to work pretty well. We occasionally have families who do not have a credit card or ask for cash instead of a check. Many of these families are able to find a family member or friend who is willing to put the hotel on their personal credit card. If not I assist them on a case by case basis.

Our application is very basic....we ask for contact info, salary range (we do not require proof), how many people we would be assisting, if this is their first conference, and why they want to come. Our criteria is based on 3 things (family income, previous conference attendance, and emotional need-all on a 3 point scale). After the scholarship deadline we figure out who we can give what to---basically all families who have a 9 receive registration and hotel fees and those who receive lower numbers may only get hotel and those with even lower numbers may only get registration fees-all figured out yearly from our allotted budget and how many people applied. Most families are grateful to get something to help out with the expenses and even seem to be more grateful when they also have to commit something to the experience.

E-mail me if you have any questions, I would be happy to help.

Malinda Heuring NFED Director of Education

The HAEA offers a couple of different Scholarships/Financial Aid Options.

1) We waive the registration fee

2) Offer to pay for their room or a portion of their room

3) Offer to pay for their gas to and from the event with a max amount.

Since you do not have corporate sponsors, you might want to limit to a certain amount of people the organization will be offered the scholarships .

I hope this helps. If you have any questions feel free to contact me.


Hello to all - so nice to check in on this important topic. The ideas shared by Lisa are very helpful. May I offer a few more, which we share among families in Massachusetts:

  • Our Developmental Disability Council ( <> ) has educational funding that is offered to families and individuals affected by developmental disabilities - the cap is $500 every other year per person, or a $2,000 cap for a single event. Every state has a DD Council, but they are able to develop programs that best suit the needs of their citizenry. Check with your local groups.
  • The New England Regional Genetics Group ( <> ) offers its own A. Merrill Henderson Scholarship Fund, which can give small scholarships to individuals who are attending conferences related to genetic disorders or human genetics. Donations from NERGG's members make this opportunity possible.
  • I have experience working with pharmaceutical and durable medical equipment company reps, who kindly donated monies from their "patient education fund" in order to help parents to attend conferences. These efforts were actually facilitated by the nurse practitioner in the office of the pediatric specialist (who was committed to helping the parents attend the conferences).
  • Family Voices had a suggestion that we love to share: individuals who want to attend a conference could ask family and friends to make a small contribution to the "scholarship fund" they are setting up, in lieu of holiday or birthday gifts. If this becomes a regular tradition, it's likely to build up over time. I would recommend that parents make contact with the state chapter of Family Voices for more ideas of what is available locally - and the state Parent-to-Parent organizations. (That's Family TIES of Massachusetts for us - 800-905-8437)
  • We've heard of families hosting a yard sale for the purpose of raising awareness among the community of their family situation - and raising funds to attend a conference or purchase much-needed and unfunded equipment or home improvement projects.

Hope these suggestions are helpful. Mary Castro Summers Family TIES of Massachusetts

National Tay-Sachs & Allied Diseases Association, Inc (NTSAD) provides scholarships to families in need to attend our Annual Family Conference. Typically we award $30K to over 30 families which account for 60% of our attending families. Families have the option to 'earn' a free registration by selling raffle tickets which benefit the scholarship fund and / or apply for a grant for other expenses ie travel and hotel.

Here are the details of the program.

Kimberly Kubilus