2016 Family Conference

Dear Fellow Aicardi Families,
Thank you for attending the July 2016 Conference in Colorado Springs!

The below agencies can help assist you with future conferences. These Funding Agencies offer grants to families to defer conference travel expenses.

National Agencies or Groups


State and/or Regionally Limited


If there isn’t a form . . . here are some tips:

Some organizations may not have a form to fill out—in that case, you will need to write a letter or a personal statement and submit that. Here are some suggested guidelines for what to include in that letter (with thanks to for the model). It may be that some of these are not relevant to you—they are meant only to serve as a guideline, not to be followed rigidly.

  1. A summary statement:“I am asking for your financial assistance in providing travel and convention funding necessary so that I/my family may attend the Aicardi Syndrome Family Conference in Colorado Springs, July 21-24, 2015.”
  2. Introduce your child and explain Aicardi Syndrome: “My child, _____, is _____ months/years old and has Aicardi Syndrome. Aicardi Syndrome is a very rare neurological disorder that mostly affects girls, though does rarely appear in boys. It causes a range of significant physical and cognitive disabilities; early-onset, hard-to-control seizures; and risks of early mortality. Details about the syndrome can be found at the Aicardi Syndrome Foundation website: [If you would like to add a few details here about your child’s personality or the severity of the presentation of symptoms, etc., that is great.]”
  3. A statement of the costs: How much will it cost (see #6, below, for the detailed budget, which you should probably work out before you write this section) and how much of the costs will you be able to come up with on your own.
  4. A statement of your goals in attending the conference:“By attending the conference I hope to gain valuable information in order to enrich my family’s relationship with, and to provide the best possible support and care for, our child with Aicardi Syndrome. The conference will also provide enormous family support as we make connections with other families affected by this very rare, and sometimes isolating, disorder.” [You might also here indicate if your child has siblings who would be attending and if that would be a particular benefit.]
  5. Procedures of the conference:“The Aicardi Syndrome Family Conference will last three days. Sessions are geared toward coping skills of parents, educational and medical know-how in parenting our children, sessions on bereavement, important updates from top scientific researchers in the field, as well as social activities for Aicardi girls, their siblings, and parents.” If the conference agenda has been printed by the time that you apply for your grant, you could also include it.
  6. A detailed budget:“Our plane tickets will cost $_____. Taxi fare from the airport (round trip) will be $_____.” Or, “We will be driving our accessible van ____ miles to the conference and back. Mileage expenses for the trip will be ______ . [here, use the IRS formula for medical transportation of .23/mile (]. You could also add any hotel stays and costs of meals that you will have in transit to the conference.

And then there are TAXES…

Don’t forget that, even if you aren’t able to find a grant to assist you, some of the expenses you incur in travelling to a conference at which medical information is shared is CURRENTLY tax deductible if you itemize your medical expenses on your federal tax return.  See “medical conferences” here for 2015 rules:  These may change by next year, but it is something to keep on your radar.

We really hope that these resources are helpful, and please let us know if you are successful in obtaining a grant, as we would like to keep track of funders who have been supportive.

Can’t wait to see you at the conference in July 2016!

Warm wishes,

The 2016 Aicardi Syndrome Conference Committee