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
- The ARC of the United States. Each chapter offers different programs/services, so you need to check your local chapter: http://www.thearc.org/find-a-chapter. As an example, the ARC of IL offers a Consumer Stipend Project which offers grants to enable people with developmental disabilities and their family members to attend conferences of their choice that are directly related to developmental disability issues: http://www.thearcofil.org/programs.
- The Prayer Child Foundation, based in Arizona, provides assistance to children that are 18 years and younger with physical and emotional challenges. They provide support to individuals located within the PCF’s supporters’ local communities, but it is not clear where those communities are. There are no other specific guidelines, and they have a very open application process with no application deadline. They promise a six week turnaround: http://www.prayerchild.org/submit_request.html.
State and/or Regionally Limited
- For Chicago-area families, Illinois StarNet has a Family Fellowship to reimburse parents for the expense of attending workshops, seminars, or conferences, up to $200 annually: http://www.thecenterweb.org/starnet/funding.html. They give preference to in-state events, but it would still be worth a shot. The deadline appears to be ongoing.
- For families in Florida, Indiana (including the greater Michiana area), Rhode Island and New York, an organization called Hannah & Friends funds quality of life grants for families who care for children and adults with special needs. The deadline for 2016 funding is June 1: http://www.hannahandfriends.org/resources/hannahs-helping-hands-grants/
- All states have Councils on Developmental Disabilities, and some will fund conference travel (and often have other great resources for families, so check yours out!). Some states require that you agree to share the knowledge you gained at the conference with others groups in your state (and we would recommend that you target schools/classrooms with other students with DD as your point of sharing, as often there are not other families with AS nearby). We have tried to identify all the active programs across the United States, but if your state is not listed below, you should take a minute to review your own state’s CDD page in case we have overlooked something.
- Idaho: The state’s Council on Developmental Disabilities provides funding for families to attend conferences relating to a family member’s disability. You need to file a post-attendance report stating outcomes/lessons learned and a plan to share what you’ve learned with other Idaho families affected by developmental disability. Deadlines are 30 days prior to the conference: http://www.icdd.idaho.gov/resources/funding.html.
- Indiana: The state’s Consumer Investment Fund supports conference travel. The application is a bit challenging, but they will fund up to $1000 per family to attend conferences relating to the family member’s disability. Deadline is 5 weeks prior to an out-of-state event: http://www.in.gov/gpcpd/files/Individual_CIF_Application.pdf.
- Maryland: The state’s Developmental Disabilities Council supports travel to out-of-state conferences. There is no fixed amount, but they encourage cost-sharing with families, rather than subsidization of the entire costs. Deadline is 90 days prior to conference: http://www.md-council.org/funding/conference-participation-fund/.
- Nevada: The Governor’s Council on Developmental Disabilities provides grants of up to $750 for individuals and $1000 for families to attend conferences out of state. No deadline provided, so call contact on the webpage for details on timing: http://www.nevadaddcouncil.org/consumer-leadership-3/.
- North Carolina: The state’s Jean Wolff-Rossi for Participant Involvement Fund offers up to $800 per person (and up to $1800 per family) for participation in out-of-state conferences. Deadlines for application are 60 days prior to registration date for an out-of-state event; decisions are made monthly on an ongoing basis: http://nccdd.org/initiatives/conference-funding/rossi-fund.html.
- North Dakota: The State Council on Developmental Disabilities has a Consumer Leadership Fund that supports family participation in conferences, up to $750 per individual or $1000 per family; they do require that grantees share experiences with the SCDD or other advocacy organizations in the state. Deadline is 90 days prior to the event: http://www.ndcpd.org/SCDD/pdf/2016/Consumer%20Leadership%20Development%20Fund%202016%20Combined.pdf.
- South Dakota: The state’s Council on Developmental Disabilities provides funding up to $750 per person for out-of-state conference travel, but the applicant must show that other funders have been approached with no success. Deadline is 60 days prior to the event: http://dhs.sd.gov/ddc/stipnd.aspx.
- Tennessee: The state’s Council on Developmental Disabilities provides grants of up to $500 for individuals, and $1000 for families, to attend conferences related to a family member’s disability. Deadline is 30 days prior to the event: http://www.tnstep.org/news/?id=460 and here for the application link: http://www.tn.gov/cdd/article/education-travel-fund .
- Utah has an Empowerment Fund designed to support family attendance at disability-related conferences, but the information has not been updated since 2009. If you wish to pursue this, call first to make sure that the funds are still available and procedures are clear. http://www.utahddcouncil.org/grants/empowerment/index.html
- Vermont: The state’s Developmental Disabilities Council provides grants of up to $500 for families of people with disabilities to travel to conferences. Deadline is 30 days prior to the conference: http://www.ddc.vermont.gov/grant-information. 1. Prior to completing an application, contact the organization for which you are planning to apply for support to ensure the program still exists and your request would be eligible.3. If you are awarded a grant, please send a thank you note to the organization.
- 2. Complete the necessary paperwork or online forms and submit prior to any published deadline dates. Follow all instructions provided by the organization.
- Preparing to Apply:
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 FamilyConnect.org 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.
- 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.”
- 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: https://aicardisyndromefoundation.org/aicardi-syndrome/. [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.]”
- 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.
- 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.]
- 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.
- 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 (https://www.irs.gov/Tax-Professionals/Standard-Mileage-Rates)]. 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: https://www.irs.gov/publications/p502/ar02.html. 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!
The 2016 Aicardi Syndrome Conference Committee