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National Foundation For Ectodermal Dysplasias

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

EIN: 371112496 ✦ Fairview heights, IL ✦ Designated as a 501(c)(3)

Overview

What is National Foundation For Ectodermal Dysplasias?

The National Foundation for Ectodermal Dysplasias (NFED) is a nonprofit organization located in Fairview Heights, Illinois. Its primary mission is to empower and connect individuals and families affected by Ectodermal Dysplasias, a group of rare genetic disorders. The organization achieves this through various support programs and the dissemination of high-quality information. This information is shared via the First Connect program, a website, medical/dental guide series, and conferences. The National Family Conference, a significant event, brings together entire families to learn, share experiences, and network with experts in the field. Affected children also participate in educational and social activities at these conferences, boosting their self-esteem. Financial assistance is provided to help individuals attend these conferences. The Family to Family Network, another initiative, connects families with local liaisons who offer moral support, information, guidance, and resources. NFED's workforce consists of 8 individuals committed to enhancing the lives of those affected by Ectodermal Dysplasias.


Official website here: www.nfed.org

Is National Foundation For Ectodermal Dysplasias legitimate?

National Foundation For Ectodermal Dysplasias is a legitimate nonprofit organization registered as a 501(c)(3) entity. National Foundation For Ectodermal Dysplasias 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.

Here are some key statistics you may want to consider:

Executive Compensation: $0
Professional Fundraising Fees: $0
Other Salaries and Wages: $583,754

For more financial information, click here


Official website here: www.nfed.org

What is the mission statement of National Foundation For Ectodermal Dysplasias?

The National Foundation for Ectodermal Dysplasias is committed to empowering and connecting individuals and families affected by ectodermal dysplasias through education, support, and research. Their mission is to provide high-quality information to enhance the quality of life of affected individuals and their families. This information is disseminated through various platforms such as the First Connect program, a website, medical/dental guide series, and conferences. The National Family Conference, their flagship program, brings entire families together to learn, share experiences, and network with experts. Affected children also participate in educational and social activities at the conferences, helping to build self-esteem. The foundation also offers financial assistance to individuals to attend these conferences and maintains a family-to-family network, connecting families with local liaisons who provide moral support, information, and practical advice.


Official website here: www.nfed.org

Who is the CEO of National Foundation For Ectodermal Dysplasias?

Karl Nelsen is the President of National Foundation For Ectodermal Dysplasias.


Official website here: www.nfed.org

What is the revenue of National Foundation For Ectodermal Dysplasias?

National Foundation For Ectodermal Dysplasias's revenue in 2022 was $1,493,211.


Official website here: www.nfed.org

Who are the executives of National Foundation For Ectodermal Dysplasias and what are their salaries?

The average compensation at National Foundation For Ectodermal Dysplasias during 2022 was $72,969. There are 8 employees and 375 volunteers at National Foundation For Ectodermal Dysplasias.

Here are 13 key members and their salaries:

    Mary Fete (Executive Director)
  • Compensation: $118,124
  • Related: $0
  • Other: $0

    • Timothy Mickelson (Director Of Development)
  • Compensation: $113,461
  • Related: $0
  • Other: $0

    • Karl Nelsen (President) [Trustee/Director]
  • Compensation: $0
  • Related: $0
  • Other: $0

    • George Barbar (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0

    • Keith Throm (Secretary) [Trustee/Director]
  • Compensation: $0
  • Related: $0
  • Other: $0

    • Richard Stratz (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0

    • Krista Basile (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0

    • Roy Moffitt (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0

    • Marianne Vermeer (Treasurer) [Trustee/Director]
  • Compensation: $0
  • Related: $0
  • Other: $0

    • J Timothy Wright Dds Ms (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0

    • Anil Vora (Vice President) [Trustee/Director]
  • Compensation: $0
  • Related: $0
  • Other: $0

    • Ruth Geismar (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0

    • Jack Kriz (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0


  • Official website here: www.nfed.org

    Where can I find the form 990 for National Foundation For Ectodermal Dysplasias?

    The National Foundation For Ectodermal Dysplasias’s most recent form 990 was submitted in 2022 and can be accessed here


    Official website here: www.nfed.org

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

    Mission Statement of National Foundation For Ectodermal Dysplasias

    The National Foundation for Ectodermal Dysplasias, a nonprofit organization, is committed to empowering and connecting individuals and families affected by ectodermal dysplasias. Through education, support, and research, the foundation aims to improve the quality of life for those touched by this condition.

    In terms of support, the National Foundation for Ectodermal Dysplasias has a team of family members and affected individuals who oversee its programs. They publish high-quality information, which is shared through various platforms such as the First Connect program, a website, medical/dental guide series, and conferences. The organization's flagship event is the National Family Conference, which brings entire families together to learn, share, and network with one another and with expert care providers. Affected children and their siblings also attend Kids Camp at the conferences, where they engage in educational and social activities with other children like them, helping to boost their self-esteem. The foundation provides financial assistance to individuals to attend the Family Conference.

    Furthermore, the National Foundation for Ectodermal Dysplasias operates a Family to Family Network, connecting families with a caring liaison in their region. This liaison offers moral support, information, practical advice, guidance, and resources to the families. This network is a crucial part of the organization's mission to empower and connect individuals and families affected by ectodermal dysplasias, providing them with the support they need to navigate their lives with this condition.

    Impact

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




    Thursday, August 15, 2024

    The National Foundation for Ectodermal Dysplasias empowers and connects individuals and families affected by ectodermal dysplasias through education, support, and research. Their family support teams oversee programs that provide valuable information to increase quality of life for those with the condition. The foundation's initiatives, such as the First Connect program, website, medical/dental guide series, and conferences, serve as crucial resources for affected individuals and their families. The National Family Conference, a cornerstone program, brings families together to learn, share, and network with each other and healthcare providers. Additionally, the foundation offers financial assistance for individuals to attend the conference and operates a family-to-family network to provide support and resources. Through these efforts, the National Foundation for Ectodermal Dysplasias positively impacts the lives of those touched by this condition by fostering a sense of community, providing essential information, and supporting individuals and families in their journey.





    Financials

    This financial information is from Propublica.

    Revenue
    Expenses
    Efficiency

    Other financial information:

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

  • Investment Income: $254,390
  • Program Service Revenue: $24,687
  • Gross Receipts: $1,514,984

    • Assets and Liabilities:
  • Total Assets: $3,999,579
  • Total Liabilities: $190,948
  • Net Assets: $3,808,631
  • Programs

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

    NATIONAL FAMILY CONFER

    Revenue

    $24,687

    Organization Details

    Founding Year

    1981

    Principal Officer

    Karl Nelsen

    Main Address

    6 EXECUTIVE DRIVE SUITE 2, FAIRVIEW HEIGHTS, IL, 62208

    NTEE Category

    Code: G46Z - Disease

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