GOLD2023

K-T Support Group

aka Klippel Trenaunay Support Group   |   Milford, OH   |  https://k-t.org

Mission

The Group's mission is to provide support for K-T Syndrome patients and their families. Our objectives in accomplishing this mission are:

- To act as a support group for sharing experiences and information,

- To provide a clearinghouse for correspondence between members,

- To promote education and awareness, both in patient population and medical industry

- To promote research

- To improve the quality of life of patients with complex combined vascular malformations

Ruling year info

1999

Principal Officer

Mellenee Finger

Assistant Director

Annie Rueb

Main address

1554 Deerwoods Dr

Milford, OH 45150 USA

Show more contact info

EIN

41-1917290

NTEE code info

Specifically Named Diseases (G80)

Birth Defects (G20)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Recent technological and scientific discoveries have made possible treatment pathways apparent. Using the patient voice we are looking to sort out diagnostics, protocols, and clinical services so that maximum patient benefit is achieved.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

K-T Support Biennial Conference

Every other year since 1986 we have organized a biennial conference in conjunction with the Mayo Clinic in Rochester, MN.  The first day of the two-day event consists of medical experts in the field of vascular anomalies presenting information to members and fellow professionals. Day two encourages member interaction and provides practical management information via medical professionals and member mentors.  During both days events are planned that encourage networking and sharing among members.

Population(s) Served
Chronically ill people
People with physical disabilities
Caregivers

We attend meetings of the Vascular Anomalies Special Interest Group within the pediatric hematology/oncology group to bring patients voices to clinicians and researchers. We also participate by helping to provide training in vascular anomalies to physicians through physician-led primer sessions at their meeting

Population(s) Served
People with diseases and illnesses
People with disabilities

We strive to maintain a level of interaction and communication that benefits members internationally

Population(s) Served
Adults
Chronically ill people
People with physical disabilities
Caregivers

Collaborate with researchers and clinicians to provide first hand experience from members

Population(s) Served
People with diseases and illnesses
People with disabilities

Through Positive Exposure we are making a film for use primarily in medical schools but also available online to anyone. We will define the K-T phenotype and present a piece that accurately depicts the ongoing issues dealing with a chronic illness.

Population(s) Served
People with diseases and illnesses
People with disabilities
People with diseases and illnesses
People with disabilities

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Total number of new organization members

This metric is no longer tracked.
Totals By Year
Related Program

Internet K-T Awareness and Education

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Improve the quality of life for people with combined capillary lymphatic venous malformations through education, research, empowerment, and connections.

Expand our biennial meeting schedule to cover more regions and members

Work with physicians and scientists to advocate for the FDA, NIH, and other agencies to help fast-track any potential pharmaceutical trials.

Expand communications by engaging others as community leaders; collaborating with other advocacies.

Focus on fundraising to support objectives.

Develop a network of physicians for adult patients for the transition from pediatric care. None currently exists.

Work to include patient voices early in the scientific process: promote researcher understanding of the patient experience with K-T; capture patient perspectives and preferences on benefit-risk;
Incorporate patient input in clinical trial development and continuous improvement.

- K-T Support Group has a network of pediatric clinicians and researchers who currently treat patients or actively research potential treatments. Our teamwork with those individuals and organizations will assist us in accomplishing our advocacy goals.

- Relationships with vascular anomaly clinics across the globe will be useful in finding hosts for regional meetings.

- Recent works with awareness have opened doors for improved fundraising opportunities.

- Work with our network of physicians is ongoing with promotion of the Vascular Anomalies Primer. The development of targeted therapeutics is assisting our recruitment efforts for adult physicians.

- As a founding member of the first vascular anomalies research consortium, our goal is to promote the inclusion of patient voices early and often in clinical trials.

Our network of physicians and researchers is expanding. Global projects are underway, including additional international conferences.

Membership has increased by more than 30% in the last year because of outreach efforts.

We have increased our fundraising each year for the past six years through social media and patient-led fundraisers.

We collaborated with a group of special interest clinicians to create a tutorial to present to physicians in order to encourage more doctors into vascular anomalies as a specialty. Our tutorial was presented to a group of adult medicine physicians; this tutorial gave awareness to pediatric hematology/oncology groups across the USA.

A committee of patients has been assembled to form a strategy for transitioning to adult care for parents, leading to more independant adult patients. Clinicians will join as the transition plan progresses.

Many in our consortium have always been open to patient voices. A group of our researchers have volunteered to work our member committee to establish a playbook for both patient and researcher side.

Financials

K-T Support Group
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

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K-T Support Group

Board of directors
as of 12/22/2023
SOURCE: Self-reported by organization
Board co-chair

Judy Vessey

No Affiliation


Board co-chair

Mellenee Finger

No Affiliation

Judy Vessey

Mellenee Finger

Annie Rueb

Michael Papa

Catherine Pinkerton

Mike Bleecher

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? No
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Not applicable
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No

Organizational demographics

SOURCE: Self-reported; last updated 9/29/2022

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

The organization's co-leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability

Equity strategies

Last updated: 09/29/2022

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
Policies and processes
  • We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.