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Myelodysplastic Syndromes Foundation

Myelodysplastic Syndromes Foundation

Trenton, NJ 08620
Tax ID22-3283911

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About this organization

Revenue

$1,531,833

Expenses

$1,198,934

Mission

The MDS foundation, Inc. is an international non-profit advocacy organization whose mission is to support and educate patients and healthcare providers with innovative research into the fields of MDS, acute myeloid leukemia (AML) and related myeloid neoplasms in order to accelerate progress leading to the diagnosis, control and cure of these diseases.

About

The foundation continued its extensive patient advocacy outreach initiatives in 2018. The foundation staff communicates daily with patients and caregivers providing support and education regarding the myelodysplastic syndromes in the following formats: patient information via the foundations new 'building blocks of hope' initiative, MDS foundation newsletters, and through the MDS foundation website and social media campaigns. On-site patient liason support is also provided including referrals to the MDS centers of excellence, providing information on current treatment options and available clinical trials, responses to email and social media inquiries, and providing a connection between MDS patients upon request.

Interesting data from their 2019 990 filing

The mission of the non-profit, as stated in the filing, is “The mds foundation, inc. is an international organization devoted to the support and education of patients and healthcare providers with innovative research in the fields of mds and related myeloid neoplasms in order to accelerate progress leading to the control and cure of these diseases”.

When referring to its tasks, they were described as: “Established by an international group of physicians and researchers to provide an ongoing exchange of information relating to mds.”.

  • The non-profit is operating legally in the state of NJ.
  • The non-profit's address for the year 2019 is listed as 4573 S BROAD STREET SUITE 150, YARDVILLE, NJ, 08620 in the filing.
  • The form submitted by the non-profit organization for 2019 reports 5 employees.
  • Does not operate a hospital.
  • Does not operate a school.
  • Does not collect art.
  • Does not provide credit counseling.
  • Has foreign activities.
  • Is not a donor-advised fund.
  • Is not a private foundation.
  • Expenses are greater than $1,000,000.
  • Revenue is greater than $1,000,000.
  • Revenue less expenses is $332,899.
  • The CEO compensation package within the organization is established through a review and approval process by an independent body.
  • The organization elects its board members.
  • The organization has a written policy that describes how long it will retain documents.
  • The organization has 6 independent voting members.
  • The organization has a professional fund raiser.
  • The organization was formed in 1999.
  • The organization has a written policy that addresses conflicts of interest.
  • The organization is required to file Schedule B.
  • The organization is required to file Schedule O.
  • The organization pays $379,127 in salary, compensation, and benefits to its employees.
  • The organization pays $134,393 in fundraising expenses.
  • The organization provides Form 990 to its governing body.
  • The organization has minutes of its meetings.
  • The organization has a written whistleblower policy.
  • The organization has fundraising events.
  • The organization has grants to organizations.
  • The organization's financial statements were reviewed by an accountant.