The Advocacy Committee encourages members to advocate for increased autoimmune and vasculitis research funding at the National Institutes of Health. The additional funding would support important biomedical research for improved treatments and a cure for vasculitis diseases.

Grassroots advocacy is individuals committed to influencing positive changes in their lives, their communities and in their elected governments by making their personal stories and opinions known. Getting involved means calling, writing a letter, sending an e-mail, or even visiting your elected representatives who serve you in Washington, D.C. and in your state. You CAN make changes happen.

The Chapters Committee is actively recruiting chapter leaders in all areas of the country to provide a grass root base for VF. For 90% of our members the only contact they have is the newsletter, web site, and the VF office. Personal contact can only be achieved through patients, caregivers and friends who live and work in their areas.

Direct contact with surviving patients with vasculitis is so important to the long term well being of our people. The largest source of these new chapter leaders will be the area contact people and folks that have had the opportunity to attend the international VF Symposiums. An active dialog is ongoing on what works for the strength of Chapters and attendance at area meetings.

What it means to be a Chapter Leader 

By Christy Abele

Northern California Chapter Leader

VF Board Member

Within the Vasculitis Foundation community, chapter leaders truly are the leaders in our local communities. They are vital to our organization in so many ways. These dedicated individuals host meetings, sometimes several times a year, in an on-going effort to provide support, education and awareness to our patients and their family members. They tirelessly (and patiently) field calls and e-mails from our members and potential members. Chapter leaders often provide a real sense of comfort to the newly diagnosed, parents of our pediatric patients, the very sick, and everyone in between. We are very grateful for the work our chapter leaders do.

Recently, I was thinking about our mission statement and what it means for a chapter leader. Our mission statement reads: The Vasculitis Foundation supports and empowers patients through education, awareness and research. I easily see how our chapter leaders support our members on a daily basis through education. But what about awareness and research? With a little creative thinking, could our chapter leaders be doing more?

Let's look at awareness - now that we are the Vasculitis Foundation, it's important that we open our arms to all of the vasculitis disease groups. Sometimes that's easier said than done. A quick and easy thing our chapter leaders can do to recruit new members is to post meeting invitations in your doctors' offices. That way, vasculitis patients who are not currently members will see the invitation and have the chance to attend the meeting (and hopefully become members!) Posting meeting notices in local newspapers or in the calendar of events on your town homepage is another way of increasing our profile within the Vasculitis community as well as the general public. The chapter handbook has revised press releases that can be used to announce meetings in local newspapers.

Another way a chapter leader can raise awareness is to enlist the help of chapter members to participate in current Vasculitis Foundation advocacy initiatives. For example, in September 2007, the Vasculitis Foundation is asking members to go to the advocacy tab of the VF website and to write a Letter to Congress to help raise awareness about Vasculitis with members of the House and Senate health care committees. Chapter leaders can have a direct hand in making this Letter to Congress campaign a success by contacting their members and urging them to take action to support the Vasculitis Foundation's advocacy goals.

What about research? I've always considered research to be our program of awarding small grants to researchers with promising projects in the field of Vasculitis. Then one day, it hit me....Chapter leaders, (as well as board members and our general membership for that matter) CAN do something to further research. It's simple - join a study and give a DNA sample! There are several studies you can get involved in that don't require too much time. Call our HQ for details. Also, stand up and be counted - register with the VCRC if you haven't already. The more critical mass we have, the larger our voice is on Capital Hill.
These are just some of the additional (and creative) ways our chapter leaders (and even members) can get involved and do more for the Vasculitis Foundation. I'd love to hear other ideas!

The Education and Awareness Council is composed of people who have a form of vasculitis or have a personal or professional interest and commitment to the field of vasculitis. The Council has been organized to promote the goals and programs of the Foundation and to provide the VF Board of Directors with feedback relating to the needs of those it serves.

Education and Awareness Council

The International Committee liaisons between the VF and the international support groups and area contacts to ensure patients worldwide receive the assistance they need. The committee also raises awareness of Wegener's in the international medical community.

The Marketing Committee is responsible for promoting the activities of VF in the general public and medical community.

Solicits and receives nominations of individuals who would likely be good additions to the VF listing of Physician Consultants, extends letters of invitation and application forms, reviews applications received, and presents selected applications to the VF Board of Directors for their action.

Implements the VF Research Program, including the solicitation, receipt, and review of research proposals, and advises the VF Board of Directors as to the funding of reviewed proposals.

The Resource Development Committee's' charge is to increase the fundraising base and dollars raised to support the operation of VF and to provide additional research contributions. Fundraising is also a means to raise awareness and advocacy efforts by reaching out to the medical community and to the VF contact network. The committee also works with staff to oversee events that organized in support of VF.