About K-T Support Group
The K-T Support Group (Klippel-Trenaunay Support) was founded in 1986. We welcome patients and families with K-T Syndrome and similar conditions as members. Our objectives:
Bridging the gap between immediate patient needs and research for long term solutions.
Support Connect Educate Empower
We provide families, adults with combined vascular malformations, and professionals with information and opportunities to connect and learn from each other through
- biennial meetings of patients and families (medical advisers available by making separate arrangements)
- confidential group roster available to members only
- social media interaction
- webinars
- periodic newsletters
- distribution of literature and information
- promote research
- phone support
- advocacy among medical community
- confidentiality of members
We hope to begin regional meetings as opportunities arise.
Print a copy of our informational brochure for your files, and take one to your physician.
History
In 1986, Judy Vessey established a connection with another family through Mayo Clinic's Dr. Gunnar Stickler. The two families met and stayed in touch, sharing their experiences. Judy's outreach made the number of families grow until those connections turned into biennial meetings and much more.
Judy guided the group from those Midwestern USA origins to an international membership, gaining the respect and awareness of the medical community that treats vascular anomalies. After twenty six years as executive director, Judy remains active as director emeritus and board member.
Three decades later the group continues connecting families through meetings, website, social media, phone support, and newsletter. K-T Support has provided many families with answers, direction, and connection in an area where isolation was the norm.
Director Mellenee Finger provides ongoing support and is the driving force behind daily operations. Annie Rueb has joined the all volunteer administrative team as Assistant Director. Mellenee and Annie are continuing the tradition by expanding awareness in the medical community while also connecting and educating members and their families.
After many years with a Klippel-Trenaunay diagnosis, Sinead Z. was faced with a change in diagnosis. Relieved to find answers to many questions but confounded that so many questions remain, Sinead has dedicated herself to helping lead others to find answers about Parkes Weber. Sinead is the coordinator for Parkes Weber Information.
...we heard about the support group and went to our first meeting when she was 4 months old. The information we learned from all the people there was and still is the most beneficial thing.
- member Carrie L.
Medical Directors
Dr. David J. Driscoll
Department of Pediatric Cardiology
Mayo Clinic
Rochester, Minnesota
Dr. Peter Gloviczki
Division of Vascular Surgery
Mayo Clinic
Rochester, Minnesota
Dr. William Shaughnessy
Department of Orthopedic Surgery
Mayo Clinic
Rochester, Minnesota
Dr. John Mulliken
Department of Plastic and Oral Surgery
Boston Children's Hospital
Boston, Massachussets
Dr. Denise Adams
Department of Hematology
Boston Children's Hospital
Boston, Massachusetts
Dr. Steven Fishman
Department of Surgery
Boston Children's Hospital
Boston, Massachusetts
Dr. Patricia Burrows
Department of Interventional Radiology
Children's Hospital of Wisconsin
Milwaukee, Wisconsin
Dr. Ronald Vessey
Internal Medicine
Minneapolis, Minnesota
Advertising
K-T Support offers an advertising free website for members.
Affiliations
The K-T Support Group is an Associate member of the National Organization of Rare Disorders (NORD).
Tax Status
The K-T Support Group is recognized by the Internal Revenue Service as a non-profit, tax-exempt organization. This means that any gifts or contributions made from the date of incorporation (August 31,1998) will qualify as contributions to a tax exempt organization (i.e a Section 501 (c) (3) organization) for federal income tax purposes.).
EIN: 41-1917290
Check us out on Guidestar.
Cases of combined vascular malformation vary widely from person to person, and each person must be treated on an individual basis. Any opinions/statements expressed on this site are for general information only. The opinions/statements made are not the opinions/statements of the K-T Support Group. K-T Support Group does not recommend treatment for specific individuals and in all cases recommends that you consult your physician or local treatment center before pursuing any course of treatment.
All content on this site researched and chosen by a committee including Mellenee Finger, Dr. Teresa Douglas, and select medical advisors. Site questions or comments may be directed via email to [email protected].
Page last updated April 29, 2021