Our Vision

Our Vision

The Vasculitis Foundation advocates for early diagnosis, leading edge treatment and ultimately a cure for all types of vasculitis.

Our Mission

The Vasculitis Foundation supports and empowers patients through education, awareness and research.

Who We Are

The Vasculitis Foundation (VF, formerly the Wegener’s Granulomatosis Association) was founded in 1986 by Marilyn Sampson, a Wegener’s patient and registered nurse. The original group had three members.

The VF was established to alleviate the isolation that patients and their families experience when these rare life-threatening diseases affect them. The VF helps patients and their families build a strong positive outlook.

VF now has over 4,000 members and is the largest patient support group and the only international organization for people with vasculitis.

Dues and donations are the VF’s largest sources of underwriting for our many services. Through our website, newsletter, brochures, informational materials, medical consultants, chapters and support groups, we raise awareness and educate our patients, family members and friends.

If you are a patient and cannot afford to pay dues, please let us know. We will waive payment, because it is essential that you have access to the latest information on vasculitis and VF activities.

The VF is a registered 501 (c)(3) non-profit organization; our dues and donations are tax-deductible.

Services include:

Become A Member of the Vasculitis Foundation

Membership: New Members & Renewals

The Vasculitis Foundation is the international organization for patients with vasculitis, their families, friends and the medical professionals treating them. The Vasculitis Foundation  provides educational and emotional support to patients, assisting them and their families in understanding the disease and recovery process.

Through its bimonthly newsletter, website, information packets, 800 telephone number and symposia the Vasculitis Foundation strives to improve the lives of all patients living with vasculitis. The Vasculitis Foundation also has an extensive network of international contacts and chapters/support groups that meet on a quarterly or semi-annual basis.

The Vasculitis Foundation is the largest private funder of research on vasculitis.  

For a minimum payment of US$35, you can become a member of the Vasculitis Foundation. Dues support the organization's work on behalf of all vasculitis patients. Dues and donations are the largest sources of underwriting for it's many services.

If you are a patient and cannot afford dues, please contact the Vasculitis Foundation office. Payment will be waived to ensure you access to the latest information on vasculitis and Foundation activities.

Thank you for your support.

Join the Vasculitis Foundation. 

Renew your VF membership today.

 

Benefits of Membership

Education
VF provides emotional and informational support to patients with vasculitis, assisting them and their families in understanding the disease and recovery process.

 

Website
Provides up-to-date information on vasculitis, links to other informative websites and promotes activities of the organization.

Information Packets: VF maintains a library of reference materials on vasculitis and provides information on the diseases, treatments, medications and coping mechanisms for patients, family members and medical professionals.

Newsletter: Bimonthly 20-page newsletter provides the most current information on vasculitis, treatments, research and updates on the organization’s activities and is distributed to over 4,600 members worldwide.

International Symposia: VF sponsors educational conferences for patients and family members every other year. Speakers include the top medical experts treating and researching vasculitis. The meetings provide forums for medical and scientific discussion and an opportunity to meet other patients with vasculitis and family members.

Awareness
Public Awareness: Many patients go undiagnosed for months/years after developing symptoms. VF works to raise awareness of the disease through television and newspaper interviews, public service announcements, press releases, hosting awareness events and speaking at local community, religious and civic organizations.

Medical Consultants: Early diagnosis of vasculitis is key to preventing permanent organ damage and helping patients regain their health. VF Medical Consultants collaborate (at no charge) with medical professionals around the world on patient care.

Support of Local Chapters
VF support groups and chapters are the backbone of the organization. Scattered around the globe, the groups meet several times a year to discuss medical and research updates and to offer comfort and support to each other. In addition, VF collaborates with other patient support organizations around the world to improve the lives of all vasculitis patients.

Speakers’ Bureau
VF provides speakers and informational material for civic, community and religious meetings.

Research
The VF Grant Program provides seed grants to support pilot studies in researching etiology, epidemiology, diagnosis and treatment, including approaches that would prevent complications, and development of coping skills for living with this disease.
 

People at Vasculitis Foundation

Staff
 
Joyce A. Kullman
Executive Director
Joyce began volunteering for the Vasculitis Foundation in 1995 and became executive director in 2002. Her passion is improving the lives of patients living with vasculitis.
 
Joyce is a member of the Coalition of Patient Advocacy Groups, the National Coalition of Autoimmune Patient Groups, the Missouri Patient Access Coalition and PARS. 
 
She volunteers as tax collector for her town, Houston Lake, Missouri, a small community of 300. Joyce enjoys participating in triathlons, swimming and biking endeavors and loves traveling and hiking. She is a graduate of the University of Missouri - Columbia.
 
 Shannon Morgan, New Chapter and Patient Support Coordinator

 Shannon, who started with the organization in 2002, works from her home in Florida. She communicates with new patients and family members and coordinates the Chapter/Support Groups and Area Contacts.

When she is not working, she enjoys helping minorities learn to read, write and speak English as a second language. Shannon, also, enjoys belonging to the organization,"Family Promise," which helps the homeless.

Jennifer Price, Financial Coordinator

Jennifer joined the organization in 2006 and handles the accounting and financial duties. She is a graduate of Park University and holds a Bachelor of Arts degree in Accounting and Business Administration/Marketing. She is married and the mother of one daughter.
   
 

Mary Ann Quick, Member Support  Coordinator     

Mary Ann joined the organization in 2003 and processes all data entry, coordinates United Way and Matching Gift donations and email requests. She enjoys talking with people and being of help in anyway. Mary Ann is a mother of three and grandmother of eight and enjoys volunteering for the St. Pius X Alumni Committee. She is also a member of a Kansas City biking, camping and whitewater rafting group.

 

Support the Vasculitis Foundation

There are many different ways to support the Vasculitis Foundation.

Donations
You can join us as we provide support, raise awareness, and encourage and fund research. You can make a contribution of $25, $50, or $100 or whatever you can afford to support our work at the VF. Learn more about donating.

Matching Gifts

Many companies offer a Charity Matching Program, in which the employer matches donations made by an employee to the charity of his/her choice. Please contact your Human Resources office to find out if your company has a matching gifts program.

America's Charities

America's Charities is a federation of 100 member charities. Through our membership, the VF receives a % of your donation, with the rest going to America's Charities.

United Way Campaign

If your employer participates in the United Way Campaign, you can designate the Vasculitis Foundation to receive your donation. The VF receives a % of your total donation, with the remainder going to the United Way.

Attend or Host Events
Our members hold fundraising events to support our efforts. Would you like to attend an event? Host an event? Learn more about events.

Planned Giving

Learn more about naming the Vasculitis Foundation in your will.