The FamilieSCN2A Family & Professional Conference is two days long. Registration for the conference begins Thursday from 4 - 7 pm. The conference runs Friday from 8 am - 5 pm and Saturday from 8 am - 2:30 pm (for families) and 3 pm (for professionals).

The price for registration for the 2019 conference will be $175 for families up to 6 participants total. Cost for professionals in the industry is $250 or $300 for professionals participating in the CME course. This price includes entry into all sessions Friday - Sunday, breakfast and lunch on all days, the SCN2A Family & Professional Appreciation Dinner on August 2nd and any organized activities.

We are excited to announce the opportunity to earn up to 12.5 AMA PRA Category 1 Credits™ to registered professionals at our upcoming SCN2A Family & Professional Conference!

The University of Washington School of Medicine is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians.

The University of Washington School of Medicine designates this live activity for a maximum of 12.5 AMA PRA Category 1 Credits™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

The Group Discount Rate per night for a room at Graduate Seattle is $189 (+ tax = $218.49) OR Junior Suites (if requested) $219.00 + tax.

Please be aware if you are arriving earlier in the day, hotel rooms may not be ready until 3:00 pm.

Everyone, including those who have been granted scholarships, will be required to provide a credit card at registration for any incidentals.

Yes, presenter slides will be posted online after the meeting concludes.

The audience is typically made up of SCN2A family members and professionals who work with or have an interest in SCN2A or sodium ion channels. Please note children are not permitted in the conference room, and formal childcare is not included. There will be snacks, drinks and activities in the hospitality room for children with SCN2A and their siblings. All children must be accompanied by a parent or caregiver at all times.

1st Conference was held in Chicago, IL at Lurie Children’s Hospital in 2016

2nd Conference was held in Wilmington, Delaware at Nemours Alfred I. duPont Hospital for Children

Attire for the conference is business casual.

The conference and kid play rooms room may be chilly, so bring a light jacket or sweater.

Dinner Friday night at the hotel will be casual; jeans are acceptable.

No children are allowed in the conference room. All children attending the conference must be accompanied by a 1:1 caregiver with them. There will be a designated “kid play room” provided which will be close by.

Meals, unless stated otherwise, will all be on your own – please plan ahead.

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 acknowledgement to the Aicardi Foundation and the Dravet Syndrome 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: 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: 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: 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: 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 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: 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 Michigan 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 2017 funding is June 1: 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: 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: 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: 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: 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: 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: www.ndcpd.org/SCDD/pdf/2016/Consumer%20Leadership%20Development%20Fund%202016%20Combined.pdf.

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 currently being redesigned. You can check back for updates on the program at ocdd.org/index.php/ocdd/getinvolved/24/, 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, but the applicant must show that other funders have been approached with no success. Deadline is 60 days prior to the event: 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: www.tnstep.org/news/?id=460 and here for the application link: 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. 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: 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.

2. If you are awarded a grant, please send a thank you note to the organization.

3. Complete the necessary paperwork or online forms and submit prior to any published deadline dates.

MEDICAID/WAIVER PROGRAMS
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 FamilieSCN2A Foundation Family & Professional Conference in Seattle, Washington August 2 - 3, 2019.”

Introduce your child and explain SCN2A: “My child, _____, is _____ months/years old and has SCN2A. SCN2A is a rare and intractable form of epilepsy and/or autism. It causes frequent, hard-to-control seizures and a range of significant physical and cognitive disabilities; and risks of early mortality. Details about the rare genetic disorder can be found at the FamilieSCN2A website: www.scn2a.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 SCN2A. 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 FamilieSCN2A Foundation Family & Professional Conference 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 SCN2A 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 (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 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 Leah Schust to have them added here.

We will be talking pictures during the entire event. You have the option to opt out of you and / or your families image(s) from conference being used in promotional materials. If you choose to do so, please email info@scn2a.org before Monday, July 29, 2019.

Due to much of the data being presented being unpublished, there is no photography or videotaping allowed at the event. The foundation will post any and all data on the website once we have obtained release.

The FamilieSCN2A Foundation has a no-solicitation policy covering all of our conferences and expositions. We do not allow solicitation at our events by any attendees or unauthorized parties without prior written permission to the FamilieSCN2A Foundation. This policy includes, but is not limited to the following unauthorized activities:

•  Unauthorized receptions & parties (including off-site events)
•  Unauthorized exhibits, mobile exhibits & hospitality suites
•  Unauthorized membership recruitment activities
•  Unauthorized promotion of non-FamilieSCN2A Foundation events
•  Unauthorized research recruiting
•  Unwelcome advances toward event participants or the FamilieSCN2A Foundation Board Members
•  Unauthorized on-site distribution of printed or electronic materials including literature, signs, flyers, invitations, tickets, forms, etc. (except business cards)
•  Any person and/or organization found to be violating this policy may be expelled from the event. No Refunds.
•  Egregious and/or multiple violations of this policy may result in disqualification from future events at the discretion of the FamilieSCN2A Foundation.