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There are many ways to support the mission of the HHT Foundation. We need people-power to fuel our many initiatives, from influencing our legislators on Capitol Hill, to planning local fundraisers, from creating a local HHT networking group to helping educate the public.
Fundraising Volunteer
Plan an event in your community to raise funds to support the Foundation and to raise awareness about HHT. There are many opportunities and types of events — from letter-writing campaigns and small activities such as garage or bake sales and car washes to larger events such as walk-a-thons and golf tournaments. Find out how you can help raise funds with friends and have fun in your own backyard! Start fundraising now.
Regional Networking Alliance
Join an HHT Regional Networking Alliance or start one in your community. There are no limits to what can be accomplished when you enlist the power and potential of individuals working together for a common purpose. A Regional Networking Alliance can provide a forum for individuals to share their common concerns and experiences. Regional Networking Alliances are critical to the mission of the HHT Foundation. Each Alliance will set their priorities. Typically these priorities will focus on the following:
- Support and Education
- Educate your community about HHT
- Organize community events to raise funds for the HHT Foundation’s mission: Education, Research and Advocacy
Link to Regional Networking Alliance
Share Your Story
Articles in newspapers and televised news segments about a genetic condition like HHT become more powerful when they feature someone with the disorder. If you are interested in being interviewed by the media to help educate the public about HHT please contact the HHT Foundation office to find out more. Read more about Public Awareness and Media
Local Publicity Volunteer
Have you ever wondered why there aren’t more articles about HHT or genetic conditions in the newspaper? Do you think there is a doctor or medical specialist you know who should be interviewed on the local news about HHT? Do you want see HHT move beyond the realm of medical literature and into the arena of popular media? Regional groups and HHT members can be quite effective in persuading their local media to present articles and television segments about HHT.
Learn more about Public Awareness and Media
Legislative Advocate
Educate our legislators about HHT and voice your concerns to help shape policies that encourage research and other issues that relate to your life with this condition. Members of the HHT Foundation can travel to Washington, DC or meet locally with Representatives and Senators to educate them about HHT and advocate for federal funding for HHT research and treatment programs. The Foundation often sends out legislative alerts through email to members. Foundation staff can provide information on how to speak to your legislators either locally or on Capitol Hill, or develop letter-writing campaigns. By participating in these activities, you can make a difference.
Link to Legislative Advocacy
National Conference Volunteer
The success of the HHT Family Conferences held in different cities each year depends greatly on volunteer participation, especially from people who live in the area. HHT staff will work with local groups, or any interested individuals to identify opportunities for volunteer involvement. Various positions are available. See the following listings for more details. Please contact the HHT Foundation if you are interested.
Welcome Bags and Conference Notebooks
Prior to a conference, volunteers collect items representing highlights of the host city for the registration welcome bags. Conference Notebooks require photocopying, as an in-kind service or at a local copy shop, such as Kinko�s. Welcome bags and notebooks are collated by volunteers just prior to the event.
On-site Help
Can you provide background music for a reception to welcome attendees? Help set up or break down the registration and resource area? Help staff the registration desk? Be a workshop recorder or monitor? Assist with the silent auction? With volunteer help, we can reduce the number of staff needed at conference.
Conference Fundraising
Fundraising activities can be fun and raise awareness about HHT and the conference. In addition, soliciting support from local businesses and corporations helps to defray conference expenses and reduces registration fees for attendees.
