International Association for Premenstrual Disorders

Bridging the gap between mental and reproductive health

aka IAPMD   |   Boston, MA   |  http://iapmd.org

Mission

To inspire hope and end suffering for those affected by premenstrual disorders through peer support, education, research, and advocacy.

Ruling year info

2015

Co-Founder & Executive Director

Ms. Sandi MacDonald

Main address

6 Liberty Square #2077

Boston, MA 02109 USA

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Formerly known as

National Association for Premenstrual Dysphoric Disorder

National Association for Premenstrual Dysphoric Disorder

National Association for Premenstrual Dysphoric Disorder

Gia Allemand Foundation

Gia Allemand Foundation

EIN

47-2480088

NTEE code info

Alliance/Advocacy Organizations (G01)

Counseling Support Groups (F60)

IRS filing requirement

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

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Premenstrual Disorders (PMDs) are a subtype of Reproductive Mood Disorders. PMDs affect 3-8% of women/AFAB individuals of reproductive age with symptoms commonly arising between ovulation and menstruation. Premenstrual Dysphoric Disorder (PMDD) causes symptoms of depression, hopelessness, anxiety, and suicidal behavior while Premenstrual Exacerbation (or PME) is a worsening of an underlying psychiatric disorder such as anxiety disorder or major depressive disorder. PMDs are often misdiagnosed by reproductive and mental health providers. As 90% are undiagnosed (Harv Rev Psychiatry, 2009) and preliminary data from the 2018 Global Survey of Premenstrual Disorders (2018 GSPD) suggests that more than 30% of those with PMDD will attempt suicide during a PMDD episode. Urgent interventions are needed to ensure accurate diagnosis, effective treatment, and informed support.

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?

Education & Awareness

In 2020, over 24K individuals participated in IAPMD's online peer support groups, while another 3.8K utilized IAPMD's free and confidential one-on-one peer support service. Through the power of peer support, IAPMD seeks to fill in the gaps before, between, and after professional care and/or crisis intervention.

Population(s) Served
Women and girls
LGBTQ people

Each year, over 25K individuals participate in IAPMD's online peer support groups, while another 3.2K utilize IAPMD's free and confidential one-on-one peer support services. Through peer support, crisis intervention, tools, resources, provider referrals, and telecare, IAPMD is seeking to fill in the gaps before, between, and after professional care and/or crisis intervention.

Population(s) Served
Women and girls
LGBTQ people

IAPMD is advancing research in PMDs in a variety of critical areas, including a basic understanding of the disorder, support and advocacy, and evidence-based clinical management. IAPMD collaborated with Vicious Cycle and Me v PMDD to conduct the 2018 Global Survey of Premenstrual Disorders (2018 GSPD). This landmark study of the global online community of sufferers intends to help IAPMD understand the scope of the problem of premenstrual disorders and how PMDD impacts the lives of sufferers who seek support online. A total of 3,153 people from over 56 countries participated anonymously in the online questionnaire survey. 1,425 of those who took the survey were prospectively-confirmed patients with PMDD. Dr. Tory Eisenlohr-Moul, Associate Director of Translational Research in Women’s Mental Health at the University of Illinois at Chicago Department of Psychiatry, and IAPMD Clinical Advisory Board Chair oversaw the study and is currently examining the survey data at her lab. While complete findings are still pending scientific peer review and publication, preliminary data is available which reflects our organization’s internal analyses. The full results will be published by the IAPMD Clinical Advisory Board in a peer-reviewed journal in 2019.

Population(s) Served
Women and girls
LGBTQ people

IAPMD expanded its role in the area of advocacy and public policy by launching a communications effort around the COVID-19 pandemic and its impact on the PMDD community. The organization issued a public policy statement and provided guidance and resources on common concerns of our community during the COVID-19.

Population(s) Served
Women and girls
LGBTQ people

Where we work

Affiliations & memberships

GreatNonprofits 2016

GreatNonprofits 2019

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 counseling sessions performed

This metric is no longer tracked.
Totals By Year
Population(s) Served

Women and girls, Intersex people, LGBTQ people

Related Program

Care & Support

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of groups/individuals benefiting from tools/resources/education materials provided

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Related Program

Education & Awareness

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Individuals that visited iapmd.org for free information and resources.

Number of clients participating in support groups

This metric is no longer tracked.
Totals By Year
Population(s) Served

Women and girls

Related Program

Care & Support

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

We provide group support for women and AFAB individuals in online and virtual support groups.

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.

IAPMD seeks to fill in the gaps before, between, and after professional care and/or crisis intervention; increase patient and provider awareness and understanding of PMDs; advance research in PMDs in a variety of critical areas, including a basic understanding of the disorder, support and advocacy, and evidence-based clinical management; and expand IAPMD's role and influence with policymakers to eliminate cyclical hormone-induced psychiatric disorders as a global health problem.

Education & Awareness program includes free tools and resources, webinars, conferences, translational research, and social media. IAPMD utilizes evidence-based research and methods to deliver the latest information to patients, providers, and caregivers to improve rates of diagnosis and patient outcomes. In 2018, 90k unique visitors accessed the iapmd.org website for information on PMDs, 188 individuals attended the 2018 PMDD Annual Conference, and 27.3K individuals watched our pre-recorded webinars on YouTube. IAPMD recently launched a repository of scientific papers for researchers and provider tools, and launched a surgical menopause campaign for those facing the last line-treatment option for PMDD.

Care & Support includes peer support, crisis intervention, provider referrals, suicide prevention, and telecare. This program focuses on minimizing impairment, impact, and burden of PMDs. The IAPMD peer support team provides free and confidential support to over 100 individuals each month and our virtual peer support groups host over 8,000 members. In 2018, 12 new peer support volunteers were trained to provide support and over 9336 free tools and resources were downloaded from iapmd.org. 1189 individual peer support sessions were provided in 2018 while 6,485 searches for doctors were completed in our peer-recommended provider directory.

Research focuses on the creative and systematic work of PMD researchers to learn more about PMD in regards to cellular genetic and environmental effects of the disorders. In 2018, IAPMD partnered with Vicious Cycle and Me v PMDD to conduct the largest ever community survey which assessed a variety of factors impacting the PMD community. Initial findings report that in our sample of 1,425 patients with prospectively-confirmed PMD, 19.2% had been hospitalized during a PMD episode; and 30% reported having made a suicide attempt. Of this same sample, 85% have experienced passive suicidal ideation (i.e., desire to die), 70% have experienced active suicidal ideation (i.e., desire to kill onself), 39% have made a suicide plan, and 31% have engaged in behaviors to prepare to make a suicide attempt (e.g., collecting pills, writing a note). These findings will be published in 2019 and will highly influence our suicide prevention aims within this population.

A 2018 survey of 100 IAPMD community members rated Care & Support as the number one priority (34%) followed closely by Research & Prevention (28.9%), Education & Awareness (27.8%).

Since 2013, IAPMD has become the global leader in Premenstrual Disorder (PMD) support, education, and advocacy. What started as a patient-led organization intended to raise awareness of Premenstrual Dysphoric Disorder has grown into a collaborative initiative between providers, patients, families, and caregivers to ensure those battling PMDs are met with understanding, compassion, care, and evidence-based information.

In 2014:

• NAPMDD began an online peer support program via Facebook for women and partners seeking advice on managing symptoms. NAPMDD also received it's 501(c)3 standing in the United States.

In 2015:

• NAPMDD invited members of the PMDD patient community to establish an awareness ribbon. The ribbon can now be found all over the web as a sign of awareness and recognition to those living with PMDD.

• NAPMDD Peer Support Program expanded to include a toll-free number for patients to call and receive one-on-one peer support. Our peer support program helps an estimated 40 women and partners in need each month. Our social media education and awareness posts receive above 12,000 views each week.

• NAPMDD hosted the first PMDD National Conference for women and caregivers. Guests were able to attend in person and online to (1) connect with other sufferers for support and (2) receive information on treatment options and coping techniques. The second conference will be held in September 2016 and is expanding to include research reviews and clinical training.

In 2016:

• NAPMDD assisted the Gia Allemand Foundation in raising $75,846 in the Revlon Love is On $1 Million Challenge. Funds are being utilized for general support of the foundation and research.

In 2017:

• NAPMDD merged with Gia Allemand Foundation INC to form Gia Allemand Foundation.

In 2018:

• Gia Allemand Foundation becomes IAPMD In an effort to better serve Premenstrual Disorder (PMD) communities around the world.

• IAPMD provides group peer support to over 8,000 individuals around the world in addition to 1,200 individual peer support sessions annually.

• Over 142K unique visitors access IAPMD website for free tools, information, resources, and support.

In 2019:

• IAPMD completes its 2019-2021 Strategic Plan.

In 2020:
- IAPMD hosts the first-ever 'Ignite Your Fight' Virtual Race to raise awareness of PMDD. 78 runners participated from around the world!
- Thirty-three buildings and bridges ignite teal for PMDD Awareness Month in 2020 - a beacon of hope!
- IAPMD welcomes Grace Gonzalez and Destiny Kidd-Gilchrist as our first Ambassadors to join the team.

Financials

International Association for Premenstrual Disorders
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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
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  • Compare nonprofit financials to similar organizations

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International Association for Premenstrual Disorders

Board of directors
as of 5/18/2021
SOURCE: Self-reported by organization
Board chair

Sheila Buchert

Me v PMDD, INC

Term: 2020 - 2022

Tory Eisenlohr-Moul PhD

University of Illinois at Chicago

Sheila Buchert

Me v PMDD

Clare-Louise Knox

See Her Thrive

Kate Duplessis

Canadian Public Health Agency and Health Canada

Catherine Attwood

Badger Trust

Emma Bannister

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? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? No
  • 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 2/1/2021,

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Gender identity
Female

Race & ethnicity

Gender identity

 

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 02/01/2021

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 review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • 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.