Conference Financial Support

We know that travel and attending conferences are a financial investment for individuals and families. We have compiled funding opportunities that may help offset costs of attending the Disorders of the Corpus Callosum Conference.

Scholarship Funds for Conference Registration

The NODCC has allocated two scholarship funds to help with cost of conference registration. The first fund is for adults living with a disorder of the corpus callosum and the other is for families in Illinois and surrounding states. The scholarship will help cover the cost of one conference registration ($300). Preference will be given to applicants who have never attended conference (or if significant time has passed since attendance) and financial need.

To apply, complete the applications below:

Adults with Disorder of the Corpus Callosum Application

Local Families (and surrounding states) Application

Funding from State Organizations/ Outside Sources

Conference Funding Opportunities

Note, the NODCC has compiled these opportunities from various sources and has not verified current availability of funding and opportunities. If you are aware of other sources of funding nationally or in your state, please send to Barbara at conference@nodcc.org.

 Organization  Description  Links
National Agencies  

 

 

The Arc of the United States Each chapter offers different programs/services. 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. Find local chapter: http://www.thearc.org/find-a-chapter.
Councils on 
Developmental Disabilities
All states have Councils 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. Many of these are listed in state section below.

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.

Medicaid Waiver If your child or adult is on the State Medicaid waiver, you may be able to apply for funding to cover the conference registration. Talk with your service provider/casemanager/support broker to learn if there is funding available.  
State by State    
Idaho The state’s Council on Developmental Disabilities has previously provided  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. Site not current with info. Welcome to Council on Developmental Disabilities (idaho.gov)
Illinois The Financial Assistance for Training distributes consumer stipend funds to enable people with developmental disabilities and their family members to attend conferences of their choice that are directly related to developmental disability issues.

The Arc: Consumer Stipend (Financial Assistance for Training)

https://www.thearcofil.org/about-us/programs/financial-assistance-for-trainings/

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:

Application: https://www.in.gov/gpcpd/featured-projects/consumer-education-fund/

Governor’s Fund: https://www.in.gov/gpcpd/featured-projects/consumer-education-fund/

Iowa Provides funding for person with the disorder (under age 22) to attend conference. Other areas of funding available. Children at Home – Iowa Family Support Network (iafamilysupportnetwork.org)
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/
Michigan The mission for the Megan Weisenbach Foundation is to provide financial assistance to families that have children with special needs to assist with quality of life.

The Megan Weisenbach Foundation:

https://www.themwfoundation.org/family-support.html

Michigan Families who live in Michigan can apply for a scholarship to help cover expenses for one parent (with a child, birth to 26 years old) to attend a conference related to their child’s special need. A youth (14-26 with special needs) can also apply to attend a conference related to their own diagnosis, condition or treatment with a parent or on their own.

The Family Center for Children and Youth with Special Health Care Needs

Application

Nevada 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.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
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 theevent.  
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. Details and application: 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
Texas In the past, expenses for attending conferences within the state have been covered if you are on the state’s Medicaid waiver program. Check with your service provider. Unknown if this program and funding is still in effect.  
Utah 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.
Council Grant Funding | Utah Developmental Disabilities Council (utahddcouncil.org)
Wisconsin CCOP pays for many supports and services that you can’t get through other insurance, Medicaid, or the Children’s Long-Term Support Program. It can also pay for a one-time need.

Children’s Community Options Program (CCOP)

https://www.dhs.wisconsin.gov/ccop/index.htm

Other Try your local United Way, Church, Elks Lodge, Kiwanis, Rotary or Lions Club for potential funding support.  

Taxes

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 may be tax deductible if you itemize your medical expenses on your federal tax return.  See “medical conferences” here for current rules and consult your tax preparation expert: https://www.irs.gov/publications/p502/ar02.html.

Applying for Funding

Some organizations may not have a form to fill out or you might consider making special requests to local organizations and groups. In that case, you will need to write a letter or a personal statement to submit. Here are some suggested guidelines for what to include (with thanks to FamilyConnect.org for the model). This is just a guideline and can be adjusted and customized to fit your situation.

1. A summary statement: “I am asking for your financial assistance in providing travel and conference funding necessary so that I/my family may attend the 2024 Disorders of the Corpus Callosum Family Conference in Chicago, Illinois, June 27-30, 2024.”

2. Introduce your child or adult and explain their condition: “My child, _____, is _____ months/years old and has Agenesis of the Corpus Callosum. This is a rare brain condition where he/she is missing the structural connection between the left and right halves of the brain. Common characteristics of disorders of the corpus callosum are intellectual disability, delayed or absent speech, behavior issues, symptoms of autism spectrum disorder, low muscle tone, motor delays, and epilepsy. There is currently no cure or treatment, but families and researchers are working hard to improve our knowledge of corpus callosum disorders. Details about the disorders can be found at nodcc.org

3. [If you wish, add a few details here about your child’s personality or the severity of the presentation of symptoms, need for information, etc..]”

4. A statement of the costs: How much will it cost (see #8, 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.

5. A statement of your goals in attending the conference: “By attending the conference I hope to gain valuable information to enrich my family’s relationship with, and to provide the best possible support and care for, our child with a Disorder of the Corpus Callosum. 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 indicate if your child has siblings who would be attending and if that would be a particular benefit.]

6. Goals of the conference: “The Disorders of the Corpus Callosum Conference will last three days. Goals of the conference are educating families on the corpus callosum disorders enroll in research and offer family support practices to help attendees improve the lives of their children and family. Researchers are on-site to meet with families and share the latest news on clinical trials and studies. Sessions include panels with experienced therapists, experts, and caregivers to help engage and educate attendees on best practices, successes, and challenges in caring for a child with this brain condition.

7. Include a link or a copy of the conference agenda.

8. 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 ______ . (use the IRS formula for medical transportation). You could also add any hotel stays and costs of meals that you will have in transit to the conference.