A Rare Collection - Five Advocacy Aces Share Their Conference Commandments

Once Upon A Gene

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

STXBP1

HNRNPH2

BDSRA

JdVS

KdVS

ONCE UPON A GENE - EPISODE 200 - Fundraising Strategies for Patient Advocacy Organizations Raising Money for Rare Disease Research with Lindsay Stevens