2018 KCNQ2 Cure Family & Professional Summit
September 14 - September 16
The Summit will include family and professional sessions, childcare areas, and family events.A special room rate of $139/night + taxes and fees has been set and will be available during registration.
Conference agenda and speakers to be announced. Conference registration is open.
We are aware that there are costs that families incur when traveling to this event that could possibly impede their participation. In an effort to assist you, we have put together a list of Funding Agencies that offer grants to families to defer conference travel expenses. Special acknowledgment to the Aicardi Foundation for compiling many of these helpful pointers.
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 6-week turnaround: http://www.prayerchild.org/submit_request.html.
STATE AND/OR REGIONALLY LIMITED
All states have Councils on Developmental Disabilities, and some will fund conference travel. 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 DS as your point of sharing, as often there is not another family with DS 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. Click here for a roster of Developmental Disabilities Boards by state: http://www.nasddds.org/state-agencies/ Click on your state and then on “county boards” and select your county of residence. January is a key month, in that funds are typically appropriated at the beginning of the year on a first-come, first served basis.
For states that are not listed below, if there was no specific link to a consumer investment/empowerment fund, it does not mean there is not such a fund in your state. Contact the council directly and inquire if they have available grants to help families & individuals with disabilities to attend conferences relating to that disability.
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. 2018 funding is opens in March: http://www.hannahandfriends.org/resources/hannahs-helping-hands-grants/
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.
Illinois: 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.
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 a minimum of 90 days prior to conference: http://www.md-council.org/funding/conference-participation-fund/.
North Carolina: The state’s Jean Wolff-Rossi for Participant Involvement Fund offers up to $800 per person (and up to a maximum of $2400 per event, regardless of how many people apply) for participation in out-of-state conferences. Deadlines for application are 30 days prior to an out-of-state event; decisions are made on an ongoing basis: http://nccdd.org/initiatives/conference-funding/rossi-fund.html.
Ohio: The Cuyahoga County Board of Developmental Disabilities Family Support Program may fund registration costs for conferences for families on topics related to the eligible individual. Prior approval is required for this program to fund training and conference attendance. The cost of these services will be deducted from your total annual program allowance. To check eligibility, email familysupport@cuyahogaBDD.org or by phone at 216-241-8230.
Oregon: The Consumer Involvement Fund is available for residents of Oregon. You can find the application at: http://ocdd.org/index.php/ocdd/docs/consumer_involvement_fund_application_for_individuals/ or call 800-292-4154 to check availability.
South Dakota: The state’s Council on Developmental Disabilities provides funding up to $750 per person for out-of-state conference travel. Deadline is 60 days prior to the event. Program details and the application can be found here: https://www.state.sd.us/eforms/secure/eforms/E0512V2-DDCRequestTravelExpenses.pdf.
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.
MEDICAID/WAIVER PROGRAM ENROLLEES
If your child is on Medicaid, especially a home and community-based waiver, check with your case manager. Many waivers offer educational assistance for parents to attend conferences, paying the registration fee. Travel is not typically covered, but it is worth asking about.
OTHER POTENTIAL FUNDING SOURCES
Funds may also be available through your church or synagogue; your local United Way, Kiwanis, Rotary or Lions Club.
PREPARING TO APPLY
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 KCNQ2 Cure Alliance Family Conference in Anaheim, California on September 14-16,2018.”
Introduce your child and explain KCNQ2 epilepsy: “My child, _____, is _____ months/years old and has KCNQ2 epilepsy. KCNQ2 epilepsy is a rare and intractable form of epilepsy. It causes frequent, hard-to-control seizures and a range of significant physical and cognitive disabilities; and risks of early mortality. Details about the syndrome can be found at the KCNQ2 Cure Alliance website: kcnq2cure.org. [You should add a few details here about your child’s personality or the severity of the presentation of symptoms, etc., to help personalize the request.]”
A statement of the costs: How much will it cost (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 KCNQ2 epilepsy. The conference will also provide enormous family support as we make connections with other families affected by this 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 KCNQ2 Cure Alliance Family & Professional Conference will last three days. Sessions are geared toward coping skills of parents, educational and medical know-how in parenting our children, important updates from top scientific researchers in the field, as well as social activities for KCNQ2 children, their siblings, and parents.” You might also want to include the event agenda and/or list of confirmed speakers.
A detailed budget: “Our plane tickets will cost $_____. Taxi fare from the airport (round trip) will be $_____.” Or, “We will be driving our own vehicle ____ 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.
Don’t forget that, even if you aren’t able to find a grant to assist you, some of the expenses you incur in traveling 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 current rules: https://www.irs.gov/publications/p502/ar02.html.
We 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. Or if you have additional funding suggestions, please email Scotty Sims to have them added here.