Conference Funding Assistance Opportunities

We are aware of the costs that you and your family incur when traveling to our family conferences. Our goal is to put less burden on you financially by offering potential funding options. Like any system it is not perfect so we ask this of you: 

Parents/advocates/caregivers, we need your help with resources! If you see incorrect information AND/OR missing information please contact us so we can update/correct/add. Email believe@dup15q.org

CLOSED- DUP15Q ALLIANCE FAMILY CONFERENCE SCHOLARSHIP 

Thanks to generous donors Dup15q Alliance is able to offer conference scholarships to members of Dup15q Alliance.  Scholarship funds are limited, awards will range in amount from $500-$1000. Awards are first given out to cover the cost of registration fees. If additional funds are available, awards may be given to cover hotel and/or travel expenses.

All scholarship applications must be received by May 1, 2023, to be considered for our 2023 conference. Scholarship recipients are chosen at the discretion of Dup15q Alliance Conference Scholarship Committee. 

Scholarship recipients will be notified no later than May 15, 2023.

NATIONAL AGENCIES OR GROUPS

A. The ARC of the United States. Each chapter offers different programs/services, so you need to check your local chapter: 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 that are directly related to developmental disability issues.

Example (is specific to Illinois only): https://www.thearcofil.org/about-us/programs/financial-assistance-for-trainings/

B. The National Council for Developmental Disabilities (CDD) are federally funded, self-governing organizations charged with identifying the most pressing needs of people with developmental disabilities in their state or territory. So this means not every council sets aside money for conference attendance/education in that given state.

1. Fact sheet:  https://acl.gov/sites/default/files/programs/2022-08/DD_CouncilsInfoSheet_ACL.pdf
2. This is the main council page with contact info per state. 
   1. https://nacdd.org/councils/
   2. The State table below (section III) may have further contact info for your state as well including the executive director’s email address.

C. The National Association of State Directors (Developmental Disability Services)  are present in each State. Some States have funding for family conferences to further education and enlighten those in your community. 

1. Click on your state and an information box with details on the State director, email and website should pop up. https://www.nasddds.org/state-agencies/
   1. If you have trouble finding information about such funding or grants you can try and email/call your state director and inquire if they have available grants to help families & individuals with disabilities to attend conferences relating to that disability.

D. NATIONAL ORGANIZATIONS

1. Angel’s Hands Foundation: Assistance to attend national conference with general family scholarships limited to $1000 for eligible expenses. 
2. The M.O.R.G.A.N Project:, provides conference travel and registrations, and other non-cash resources to families of children with disabilities to improve their quality of life. This is meant to be a funding of last resort for families.

E. MEDICAID/WAIVER PROGRAM

1. If your child is on Medicaid, especially a home and community-based waiver also known as CAP/C, check with your case manager. Some waivers offer educational assistance for parents to attend conferences, paying the registration fee.

F. OTHER POTENTIAL FUNDING SOURCES

1. Funds may also be available through your church or synagogue; your local United Way, Kiwanis, Rotary or Lions Club.

STATE AND/OR REGIONAL TABLE OF RESOURCES

Check HERE for more info on conference funding assistance opportunties that may be available in your state.

TEMPLATES & RESOURCES

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. 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 Dup15q Alliance Family Conference in City, State on xx/xx/xxxx – xx/xx/xxxx.”

Introduce your child and explain dup15q syndrome: 

“My child, _____, is _____ months/years old and has dup15q syndrome.. Dup15q is a rare neurodevelopmental disorder that is characterized by having an extra copy of a portion of chromosome 15. Symptoms or features may include: hypotonia, motor delays, intellectual disability, autism spectrum disorder (ASD), and epilepsy, including infantile spasms”. 

Additional details about the rare genetic disorder can be found on the Dup15q Alliance website: www.dup15q.org. [You should add a few details here about your child’s personality or  the presentation of symptoms, etc., to help personalize the request.]

A statement of your goals in attending the conference (please edit and use as needed): 

By attending the conference I hope to gain valuable information in order to enrich _____’s life, and to provide the best possible support and care for_____. The conference will also provide enormous family support as we make connections with other families affected by this rare, and sometimes isolating, disorder. The conference hosted by the  Duplication 15q Alliance will give us the knowledge, skills and can potentially enhance the decision-making ability to spread in our local community. This knowhow is not limited to Duplication 15q families but families in the special needs community that may be affected by epilepsy, ADHD, developmental delay, speech delay, Autism spectrum, and sensory processing.

A statement of the costs: 

1. 1. A detailed budget: 
      1. Plane tickets (round trip)  $_____  Or, Vehicle miles ____ (see formula within link below).
         1. https://www.irs.gov/tax-professionals/standard-mileage-rates
      2. Transport/ Taxi fare/Uber from the airport to the conference hotel (round trip) $_____.
      3. Cost of meals
      4. Registration for conference (some meals included)
      5. Hotel cost per night x $_____ nights.

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 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 2015 rules: www.irs.gov/publications/p502/ar02.html. These may change by next year, but it is something to keep on your radar.

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 believe@dup15q.org to have them added here.