Setting Up A National Conference

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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."


Heather Smith

SCID, Angels for Life Foundation

“It is understandable that some families may not be able to afford to attend a conference but I also feel that if families aren’t somehow “financially invested,” they tend to be a no show. What my organization has done is charge each family planning to attend a nonrefundable registration fee. This fee includes 6 meals (buffet style is the cheapest), lodging (for two nights only (those staying before or after conference had to pay for those nights themselves but they were offered the conference discounted rate), and admittance to all conference sessions and special activities (camp fire with s’mores and family activity in the Out of Bounds Adventure Park). The fee charged was based on the number of family members in attendance. We charged a separate registration fee for our children’s program. We raised almost $70,000 (the conference was in 2008) through industry sponsorships, grants and private donations and were able to put on a spectacular weekend for everyone in attendance.

Individual Registration - $125 Family Registration - $250 per room (maximum of 4 people in one room) Industry Registration - $250 per person Child Care Program Registration - $50/child

We received a grant to pay for our speakers’ travel and registration costs, and it also covered scholarships for (12) families to attend who could not otherwise afford to attend the conference, so that was very helpful. At the time 3 of our invited speakers came from NIH, so per government regulations we did not have to pay for their travel or registration.

Six years later we wouldn’t be able to put on an event with these same registration fees, but as you can see from what I wrote above, we tried to make the financial responsibility to the family as minimal as we possibly could.”

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:

  1. Waive the registration fee. If that did not suffice to get them to the meeting (and usually not), then we offered to
  2. Waive the fee AND pay the hotel room. If that did not suffice to get them to the meeting, we offered
  3. 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.

  1. The company donates the money directly to the family and they take care of their costs on their own.
  2. The company reimburses the family after the conference and after they have received receipts for their expenses.
  3. 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.


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."

Reimbursing

Question: What different policies do national groups have in regards to reimbursing board members for travel and lodging related to attending board meetings?

Answer #1: There may be as many policies as there are organizations. Our case requires a bit of setup first. Many boards have “give or get” fundraising commitments. Each director is responsible to donate and/or generate donations at a certain level to help sustain the organization and to employ their connections to help as well. In that context, our board discussed a variety of policies regarding donations and travel-cost reimbursement. Various experiments were undertaken. We finally settled on a policy where directors pay their own way to face-to-face meetings (one per year) or conferences (we have our F-2-F consecutively following the conference). Directors also register for the conferences (since the majority of conference registration fees cover meals and other expenses incurred on a per-capita basis). We make exceptions for directors who have “the conditions” and do not have the means to pay the travel expenses. This is typically negotiated at the time the new director is recruited. KS&A pays the costs of the meeting room(s), but directors “go Dutch” on meals (or someone picks up the tab). So the organization might pay $300 to $500 for meeting space in an airport hotel, and the directors pick-up the rest.

Answer #2: For the MLD Foundation, our board currently is not primarily tasked with fund raising - they are overseers and advisors. We cover all of their expenses to attend an annual face to face board meeting ... trying to piggyback on some other event or other travel where we can save $$$.

Frankly, I prefer to look at it this way. We cover their expenses to make it easy for us to get the best advice and guidance that we can ... If they were not able to serve because they were unable to pay a few hundred dollars a year out of their pockets it would be our loss, not theirs.

Two of our board members live near our home town, one is a MLD parent from the Southwest, and the other is a pharma employee (not working on our disease) from Boston - we try to piggyback on some of his corporate travel. So we are able to keep costs to the organization down. The in between meetings are via conference call/webinar, likely video conference call next time around.

FWIW, we do not have any paid staff, just my wife and I with periodic volunteers giving the organization a worldwide footprint (we're in Europe right now for example). We do most of the work, not the board or volunteers. Covering expenses is very high leverage for us.


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.

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