We are aware that there are costs that families incur when traveling to this event that could possibly impede their participation. To assist you, we have compiled a list of Funding Agencies offering grants to families to defer conference travel expenses.

NORD Patient Assistance Grant Program

Oracle Health Foundation Pediatric Grant

NATIONAL AGENCIES OR GROUPS

The ARC of the United States. Each chapter offers different programs/services, so 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.

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.

 
Indiana: The state's Consumer IEducation Fund supports conference travel. Funds are limited to $1,500 per person, per event for an individual, and up to $2,000 for a household. Deadline is at least 5 weeks prior to an out-of-state event:  https://www.in.gov/gpcpd/featured-projects/consumer-education-fund/

 
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.

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 Scholarship Fund assists Tennesseans with disabilities and their families, especially individuals from diverse cultural backgrounds, to attend leadership coalition meetings, disability conferences, and disability trainings held in Tennessee and across the U.S. Funds can reimburse individuals or families for the cost of registration, attendant care, hotel/lodging, transportation, child care or respite care, meals and other related travel expenses. All scholarship awards are subject to the availability of funds. Deadline is 30 days prior to the event: https://www.tn.gov/cdd/training-and-news/leadership-training-and-development/scholarship-fund.html 

MEDICAID/WAIVER PROGRAM ENROLLEES

If your child is on Medicaid, especially 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 Family Sumit in Denver, Colorado, on November 11-13, 2022."

 

Introduce your child and explain KCNQ2: "My child, _____, is _____ months/years old and has KCNQ2 Developmental and Epileptic Encephalopathy. KCNQ2-DEE 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 KCNQ2 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-DEE. 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 Family & Professional Summit will last two 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 .17/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. 

TAXES 

Don't forget that, even if you can't 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 these resources are helpful. Please let us know if you successfully obtain 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 to have them added here.