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Phelan Mcdermid Syndrome Foundation

Learn about this cause: What are the reviews? Is it Legit? Do I like the mission? What is the CEO's salary?

EIN: 043673104 ✦ Osprey, FL ✦ Designated as a 501(c)(3)

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Overview

What is Phelan Mcdermid Syndrome Foundation?

The Phelan-McDermid Syndrome Foundation, located at 8 Sorrento Drive, Osprey, Florida, is a dedicated nonprofit organization with a mission to enhance the lives of those impacted by Phelan-McDermid Syndrome (PMS). The foundation achieves this goal by actively engaging in research, collaborating with scientists, pharmaceutical companies, biotechnology firms, and academic institutions. They break down barriers to patient participation in research, offer information, and financially assist individuals in accessing certain research sites. The organization's international scientific advisory committee sets strategic goals in research and science, keeping abreast of global PMS projects and research. The primary aim of the foundation is to improve the quality of life for PMS patients through accelerated research, family support, and increased awareness.


Official website here: www.pmsf.org

What are the reviews and ratings of this charity?

94% rating from Charity Navigator.

The Phelan McDermid Syndrome Foundation has achieved a Four-Star out of Four Star rating, reflecting its strong performance in accountability, finance, and leadership. With a perfect score in leadership and adaptability, the organization demonstrates robust governance and operational practices, including a fully independent board. Their financial health is notable with a low liabilities to assets ratio and a commitment to transparency through well-maintained documentation.

User feedback highlights the foundation's invaluable support for families affected by Phelan McDermid Syndrome (22Q13). Clients have praised the foundation for its efforts in providing resources and creating a genetic repository that aids autism and epilepsy research. This grassroots organization, primarily managed by parents, plays a crucial role in advancing research and fostering community among families, despite facing challenges in fundraising capacity.

While the foundation excels in many areas, some users indicate that its limited fundraising ability might hinder its potential reach and impact. Nevertheless, the feedback suggests a positive reception within the community it serves, indicating that the foundation is effectively addressing the needs of families dealing with this genetic disorder.


This AI summary has been generated from information found on Charity Navigator and Great Nonprofits.

Is Phelan Mcdermid Syndrome Foundation legitimate?

Phelan Mcdermid Syndrome Foundation is a legitimate nonprofit organization registered as a 501(c)(3) entity. Phelan Mcdermid Syndrome Foundation submitted a form 990, which is a tax form used by tax-exempt organizations in the U.S., indicating its operational transparency and adherence to regulatory requirements. Donations to this organization are tax deductible.


Heare are some key statistics you may want to consider:

Executive Compensation: $108,000
Professional Fundraising Fees: $0
Other Salaries and Wages: $297,525

For more financial information, click here


Official website here: www.pmsf.org

What is the mission statement of Phelan Mcdermid Syndrome Foundation?

The Phelan-McDermid Syndrome Foundation's mission is centered around enhancing the lives of individuals affected by Phelan-McDermid Syndrome globally. This is achieved by accelerating research efforts, offering family support, and raising awareness about the condition. The foundation works closely with various scientific communities and organizations, including researchers, pharmaceutical companies, and academic institutions, to break down barriers to patient participation in research. They provide information and opportunities for research participation, as well as offering financial assistance for travel costs to certain research sites. The foundation's international scientific advisory committee helps set strategic research goals and stays informed about international Phelan-McDermid Syndrome projects and research.


Official website here: www.pmsf.org

Who is the CEO of Phelan Mcdermid Syndrome Foundation?

Rhonda Blumenthal is the Chief Executive Officer of Phelan Mcdermid Syndrome Foundation. The CEO's salary of Phelan Mcdermid Syndrome Foundation is $107,739 and their total compensation is $110,971.


Official website here: www.pmsf.org

What is the revenue of Phelan Mcdermid Syndrome Foundation?

Phelan Mcdermid Syndrome Foundation's revenue in 2022 was $853,648.


Official website here: www.pmsf.org

Who are the executives of Phelan Mcdermid Syndrome Foundation and what are their salaries?

The average compensation at Phelan Mcdermid Syndrome Foundation during 2022 was $40,552. There are 10 employees and 50 volunteers at Phelan Mcdermid Syndrome Foundation.


Here are 10 key members and their salaries (Phelan Mcdermid Syndrome Foundation's CEO's salary is $107,739 and their total compensation is $110,971):


Rhonda Blumenthal (Chief Executive Officer)
  • Compensation: $107,739
  • Related: $0
  • Other: $3,232
Alycia Halladay (President)
  • Compensation: $0
  • Related: $0
  • Other: $0
Denise Croden (Vice President)
  • Compensation: $0
  • Related: $0
  • Other: $0
Michael O'Boyle (Treasurer)
  • Compensation: $0
  • Related: $0
  • Other: $0
Heidi Grabenstatter (Secretary)
  • Compensation: $0
  • Related: $0
  • Other: $0
Cynthia Schauss (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Chris Jauch (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Catherine Valcourt-Pearce (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Mike Fraunces (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Lisa Brown (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0


Official website here: www.pmsf.org

Where can I find the form 990 for Phelan Mcdermid Syndrome Foundation?

Phelan Mcdermid Syndrome Foundation's most recent form 990 was submitted in 2022 and can be accessed here.


Official website here: www.pmsf.org

Learn more at the official website: www.pmsf.org

Mission Statement of Phelan Mcdermid Syndrome Foundation

The Phelan-McDermid Syndrome Foundation, abbreviated as PMSF, is an organization dedicated to enhancing the lives of individuals impacted by Phelan-McDermid Syndrome on a global scale. Their mission is multifaceted, encompassing three primary objectives: accelerating research, offering family support, and raising awareness about this syndrome.

In terms of research, PMSF collaborates with various scientific entities, including researchers, pharmaceutical companies, biotechnology firms, and academic institutions. Their goal is to overcome barriers that hinder patient participation in research, thereby advancing the quest for effective treatments for Phelan-McDermid Syndrome. PMSF does this by disseminating information about research opportunities and offering financial assistance for travel costs to certain research sites. They also work in tandem with an international scientific advisory committee (SAC) to establish strategic research and scientific goals for the foundation.

Beyond research, PMSF extends its support to families affected by Phelan-McDermid Syndrome. They provide a platform for family interaction and offer assistance in navigating through research opportunities. This holistic approach aims to improve the overall quality of life for individuals living with this syndrome. Furthermore, PMSF plays a significant role in raising awareness about Phelan-McDermid Syndrome worldwide, thereby fostering a sense of community and unity among affected families.

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Impact




July, 2024

The Phelan Mcdermid Syndrome Foundation plays a crucial role in improving the quality of life for individuals affected by Phelan-McDermid Syndrome globally. Through its focus on accelerating research, providing essential family support, and raising awareness, the foundation has made significant strides in advancing knowledge and understanding of this rare genetic disorder. By collaborating closely with researchers, pharmaceutical companies, academic institutions, and other scientific entities, the foundation actively contributes to breaking down barriers to patient participation in research studies. Additionally, the foundation offers financial assistance for travel costs to specific research sites, further enhancing opportunities for individuals with Phelan-McDermid Syndrome to participate in crucial research initiatives. Through its dedicated efforts and strategic goals, the Phelan Mcdermid Syndrome Foundation is making a tangible impact on research and science within the field, ultimately working towards finding effective treatments for Phelan-McDermid Syndrome.




This information is meant to be a general summary of Phelan Mcdermid Syndrome Foundation. Please take the time to review official sources before making any decisions based upon the content provided here.


Financials

This financial information is from Propublica.

Revenue
$853,648 (2022)
Expenses
$715,263 (2022)
Efficiency

Other financial information:

This information is from the most recently submitted tax form from this organization, which was in 2022.

  • Investment Income: -$8,775
  • Program Service Revenue: $34,615
  • Gross Receipts: $856,254

Assets and Liabilities:

  • Total Assets: $2,113,920
  • Total Liabilities: $59,480
  • Net Assets: $2,054,440

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Programs

Programs are reported by nonprofits in their tax forms and are normally their tax-exempt activities.

Registration fees

Revenue

$19,009

Store sales

Revenue

$240

Travel program reimbursement fees

Revenue

$15,366

Organization Details

Founding Year

2002

Principal Officer

Rhonda Blumenthal

Main Address

8 Sorrento Drive, Osprey, FL, 34229

NTEE Category

Code: H80 - Medical research

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