Setting Up A National Conference

National conferences are a great way to engage with people from all different areas who share a common interest. Many advocacy organizations hold annual national conferences and this is a great place to meet others with similar experiences and learn about new approaches to their situations. Conferences range from 2-4 days and may include guest speakers and workshops pertaining to the foundation's specific interest. These national meetings bring people together to strive for a cause that they are all passionate about. You can learn more tips about starting your own national convention on our Conferences, Workshops, and Meetings for Affected Individuals page.

Registration Fees

JSF & RCD

"How the foundation handles our conferences is the following:

Families are responsible for their own travel and hotel plus conference registration fees.
Our conference registration fees are per person according to these categories:
- Adults: $300
- Grandparents/Caregivers/Person with the disorder/Children ages 4 – 11: $225
- Children 0 – 3 are free

Our registration fees pay for all meals, workshops, and individual medical appointments with all specialists at our conference."

NBIA Disorders Association

"We charge $115 registration for the first person, $90 for each additional person in the same family with no charge to affected individuals or children under 8 years old. We have a scholarship fund for those who cannot afford the registration fees or hotel fees. We do not cover travel but have helped find deals, or advised on how to get local community support for travel. We ask our donors to specifically donate to the scholarship fund if they are interested in helping families attend the conference and we get a very good response that covers all those requesting help and sometimes we have some left over which is then put toward general conference costs. We use the honor system for the scholarships - if someone says they need help we take them at their word and do not require income data.

We have found the Embassy Suites hotels to be a great way to keep our conference costs low. They offer a full breakfast with the hotel fee so we do not have to cover that meal. They have suites that will sleep up to 6 people so families do not need more than one room and they like the extra living room with refrigerator and microwave. We paid $129 for rooms this past conference. They also have a happy hour every night from 5:30 - 7:30 pm with free drinks (alcohol included) and snacks. The families love this time to socialize. We provide lunch every day and a dessert social one night but they are on their own for dinner so we really keep our food costs low."

NFED

"Our conference is a 3 day event (starting on a Thursday after lunch and ending on late Saturday afternoon). Our registration fees are per person and basically cover our food costs. If our hotel is isolated from dining establishments then our fees are higher and we include all meals in our registration fees. If there are food places right by the hotel, we cut out evening meals in our registration and the fees are substantially less. We offer 2 dinners, 2 breakfasts, and 2 lunches. The rest of the conference expenses (like childcare, conference materials, speakers and staff travel, hotel costs, etc.) come from our general budget. This year, we charged as follows:

$175 per adult (age 12 and over)
$25 per child

We have a conference scholarship fund. The fund can cover registration fees, hotel reimbursement, and travel if needed. We do not “advertise” the travel, but offer that on a case-by-case basis. Families are required to reserve their own hotel room and we provide them with a check for three-nights lodging when they pick up their registration packets. Of course, we have to be flexible as some families need cash and others don’t have a credit card to reserve their room, but that too is on a case-by-case basis.

We do not accept funds designated for a specific individual. We will accept donations to our scholarship fund, but they cannot be designated. If families get personal donations to fund their trip, they are not tax deductible."

Waiving Registration Fees/Scholarships

Some organizations have come across special cases where individuals want their entire stay hotel stay and all conference registrations paid for by the foundation after submitting a donation amount. The approaches to these situations vary depending on your specific case but if this occurs, you could give them a reimbursement form that they would have send to you with all their receipts (within 30 days after the conference) and then you can send them a check for that amount. But make note that there is a limit on the amount you will reimburse and make sure that it does not exceed the amount donated.

A model that you can follow is the Boy Scouts. The Scout fundraises to pay for the boy’s camping expenses, and his donors get the tax deduction because the funds go to the Troup, which, because they're restricted donations, can be directed toward the specific Scout's expenses.

You may consider raising your fees and adding a scholarship program. Although many of your families may need assistance, many probably can afford to pay more. The extra income you get from those who do pay, may offset your scholarship costs.

Unless they’re making those donations as “restricted gifts” which have legal/accounting implications, you probably want to decouple the donation and any conference travel grants you may be making. Donations have to be 100% no strings attached, otherwise the donor can’t take the tax write off for all of it. You’ve seen the “no products or services have been rendered” clause with tax receipts, I’m sure.

You may want to consider having a criteria in your conference travel grants such as the applicant’s history of volunteerism for the organization, so that you are being clear that preference is given to applicants who serve the organization.

Stories from Advocacy Organizations

HAEA

"Here are some rough guidelines for our national meeting this year. We made a tiered approach and offered to:

Waive the registration fee. If that did not suffice to get them to the meeting (and usually not), then we offered to
Waive the fee AND pay the hotel room. If that did not suffice to get them to the meeting, we offered
Fee, hotel and airfare for the patient registrant ONLY.

Meals are provided AT the conference.

For those who could drive, we offered gas cards – one to get you there and the second to get back home was picked up once at the conference (this way at least we only were liable to lose half if the registrant did not show).

We also hired an event planner for the first time who takes care of our flight & hotel room reservations and gas cards. We do not cover missed wages.

In general, give what you feel comfortable providing.

We LOVE our patients and it is sad that we have to put these guidelines into place, but we (like you) simply cannot afford to give everyone a full ride."

IMDSA

"For our conference, we allow family sponsorship. This can include hotel, banquet and registration fees. The travel and other costs are up to the family.

We have had 3 scenarios of this.

The company donates the money directly to the family and they take care of their costs on their own.
The company reimburses the family after the conference and after they have received receipts for their expenses.
The company sends us the money and specifies who it is for. We make note that this family's hotel room is on our account and we make note that the banquet and registration fees are paid for under this family's name."

Costello Syndrome Family Network

We have a policy to not charge anything for our conferences - for the program notebook, childcare (which has meant, if we don't meet our fundraising goal, tapping parents to volunteer in the childcare room), most (but not all) meals. One is a Family Dinner which has a big party atmosphere (DJ or band included). Our conferences are every other year, so that helps give us time to fundraise, and our honoraria to the speakers is determined by what funds remain. Our emphasis on the families comes from being a families-run 100% volunteer organization: we've all "been there" in terms of caring for extremely medically fragile children who, once they surmount (or their parent(s) get trained to handle) one medical event, usually develop a new event to challenge everyone in the family. This in turn produces financial fragility, and the ability to travel, especially in the infancy years, is greatly hampered by taking into consideration all the medical paraphernalia and protocols. To add a conference fee on top of that, our leadership feels, is cruel and unusual. Given our efforts to match the number of eaters to the food actually eaten, we may consider a per-person meal charge so those who change their minds won't leave us wasting our money, though we also recognize that it'll require policing. We're thinking (and this is really in the "what if" phase, to charge after the 3rd adult in the family (it's not uncommon for our families to need to travel with a nurse or aide), and the child/person with the syndrome goes free. Still and all, the thought of policing each meal is a big detractor.

More tips and experiences can also be found at Scholarships for your participants/families/members.

Liability Insurance

When hosting an off-site event, your venue may require that you show proof of liability insurance to cover any accidents that may occur. Even if it is not required, liability insurance can be a wise investment to protect your organization in the event that something goes wrong. If you already have liability coverage for your group, your plan should extend to off-site events. If you don't have a general liability coverage, you can purchase insurance specifically for an event.

Nonprofit Insurance Alliance Group offers insurance plans for tax-exempt nonprofit organizations (not available in all states).

Total Event sells insurance for individual events.

Some organizations may also use signed waivers to limit their liability. For example, the National Foundation for Ectodermal Dysplasias uses the following for all of their conferences:

"In consideration of the acceptance of this registration entry, I/we the undersigned, assume full responsibility for any injury or accident which may occur while I/we am/are attending this conference. I/we hereby release and hold harmless the sponsors, promoters and all other persons and entities associated with this event from any and all personal injury or damage, whether it be caused by negligence of the sponsors, promoters or other persons or entity. Applications for minors will be accepted only if signed by a parent or guardian."

Recommendations by Location

Florida

If you are organizing a conference in Florida, CFC International recommends hiring Dave Cohen as a private audio-visual contractor. He was recommended to them by the Orlando County Sheriff's office and worked at both their 2003 and 2005 conferences. He will travel to events throughout Florida, and by hiring him the organization saved a great deal of money. For more information or an estimate, contact Dave at (321) 228-7031.