Cloves Syndrome Community

Together We Can Move Mountains!

West Kennebunk, ME   |  https://clovessyndrome.org/

Mission

CLOVES Syndrome Community supports, educates, empowers and improves the lives of those affected by CLOVES syndrome.

Ruling year info

2011

Principal Officer

Kristen Davis

Main address

PO Box 406

West Kennebunk, ME 04094 USA

Show more contact info

EIN

45-3056921

NTEE code info

Diseases, Disorders, Medical Disciplines N.E.C. (G99)

IRS filing requirement

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

Sign in or create an account to view Form(s) 990 for 2020.
Register now

Communication

Programs and results

What we aim to solve

This profile needs more info.

If it is your nonprofit, add a problem overview.

Login and update

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?

Family Assistance Program

We provides financial support related to lifelong and long-term medical costs for people living with CLOVES or PROS.

Population(s) Served

CLOVES Family Camp is an annual opportunity that focuses on community, connection, relaxation and fun.

Population(s) Served

An opportunity for patients, families, clinicians, researchers and stakeholders to gather together.

Population(s) Served

In 2021, we announced a partnership with AllStripes to create a database that will enable new PIK3CA-related overgrowth spectrum (PROS) research projects.

Population(s) Served

In 2020, we became one of thirty organizations in Chan Zuckerberg Initiative's Rare As One Network, working to create a patient-led collaborative research network .

Population(s) Served

Ongoing outreach to schools, organizations, hospitals and media outlets to raise awareness.

Population(s) Served

Back to School Bucks provides financial assistance related to apparel and shoe modifications, adaptive clothing and shoes in multiple sizes.

Population(s) Served

The International Scientific Meeting for PIK3CA Related Conditions is hosted and sponsored by CLOVES Syndrome Community.

Population(s) Served

The CLOVES Syndrome Community Contact Registry is used to inform individuals with CLOVES Syndrome and their guardians about:

1. Discoveries about CLOVES Syndrome and PROS that may impact care decision
2. Opportunities to participate in research
3. Opportunities to contribute data

Population(s) Served

CLOVES Syndrome (“CLOVES”) is a rare disorder. CLOVES syndrome is rare and very variable; ranging from mild to severe. The common features in most patients allow for proper diagnosis and distinction from other syndromes. The most consistent features of CLOVES are: fatty truncal mass, vascular anomalies, aggressive overgrowth, abnormal extremities, scoliosis and skin abnormalities. CLOVES is caused by a somatic genetic mutation in a gene called PIK3CA that increases the activity of the gene. CLOVES belongs to a category of diseases known as PIK3CA-overgrowth spectrum or PROS. There are currently no approved therapies or clinical trials in place for the treatment for CLOVES. CLOVES Syndrome Community supports, educates, empowers and improves the lives of those affected by CLOVES.

Population(s) Served

Where we work

Financials

Cloves Syndrome Community
lock

Unlock financial insights by subscribing to our monthly plan.

Subscribe

Unlock nonprofit financial insights that will help you make more informed decisions. Try our monthly plan today.

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

Want to see how you can enhance your nonprofit research and unlock more insights?
Learn more about GuideStar Pro.

Operations

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

lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

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

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

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

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

Cloves Syndrome Community

Board of directors
as of 11/22/2021
SOURCE: Self-reported by organization
Board chair

Kristen Davis

Brenda Alexander

Joe Barclay

Emily Burgess

Sara Robertson

Alice Fuisz

Lindsey Godar

Ashley McNamara

Kristen Davis