ONCE UPON A GENE - EPISODE 201
A Rare Collection - Five Advocacy Aces Share Their Conference Commandments
EPISODE HIGHLIGHTS
Melissa Hioco, STXBP1
DO:
- Offer a family hospitality room where parents can see the broadcast and stay involved in the conference.
- Provide sibling spaces and make them feel special.
- Spend the extra money to provide a buffet dinner and a kid's buffet with kid-friendly food.
- Ask for discounts on everything.
- Find a local AV company who will work within your budget.
- Create sponsorship tiers and ask for sponsorship.
- Provided one-on-one genetic counseling to families at no cost.
- Provide social opportunities for families to connect with researchers.
- Utilize an event center with a hotel for accessibility.
- Research if a city or state has incentives available when holding events there.
DON’T:
- Offer childcare because it's a liability.
- Provide a plated dinner because it's logistically complex.
- Accept the initial quote you're provided without trying to negotiate costs.
- Use the hotel's AV company because the cost will be higher.
Trish Flanagan, HNRNPH2
DO:
- Invite not just impacted families to your event, but also the researchers carrying out studies about your rare disease.
- Poll your community about event location, dates that work best, and discussion topics.
- Provide speakers with plenty of notice when inviting them to a conference.
- Make sure your event space adequately supports the patient and families' needs.
- Be transparent about the cost, inclusions and exclusions of the event.
DON’T:
- Don't leave the research team to organize and schedule patient assessments without your input.
- Don't overlook having an interpreter and special equipment that may be needed.
Amy Fenton Parker, BDSRA
DO:
- If your budget allows, utilize a professional conference planning team.
- Include a family reunion reception or party so families can reconnect.
- Schedule separate break-out sessions for moms, dads, siblings, and other caregivers.
- Use a technology provider who will make suggestions for the best outcomes and to make your conference dynamic.
- Explore pre-recorded sessions and livestreams.
- Offer a breakfast buffet so guests start their day off right.
- Provide trained professionals for childcare and make parents aware of the offering.
- Take advantage of area professionals who can offer services at the conference.
- Create a planning committee to brainstorm ideas and help on the day of the event.
- Utilize your board to assist with speakers
Kara Kilroy, JdVS
DO:
- Make space for families to connect and share.
- Manage volunteers well, meeting with them in advance to communicate plans and coordination.
- Spend money on AV to ensure you have the right set-up in-person and also capture recordings and/or livestreams.
- Sit with families and take everything in, enjoying the moment and appreciating all your hard work.
- Have a planning committee.
DON’T:
- Don't expect perfection and be ready to roll with changes and pivot.
- If you provide childcare, ensure you have options for different age groups and different needs so parents get the most out of their attendance.
Ashley Point, KdVS
DO:
- Recruit volunteers.
- Find a host family in the local area to accept shipments, recommend local services and companies and connect you with volunteers.
- Work with an event site company who understands your needs and who can negotiate costs on your behalf.
- Fundraise, fundraise, fundraise. Ask, ask, ask.
- Set a budget early, but stay flexible.
- Set a rough agenda based on what's important to your community.
- Be sure to allow for time for families to gather together and add breaks during the event.
LINKS AND RESOURCES MENTIONED