MoMMA's Voices is a program of the Preeclampsia Foundation.

Preeclampsia Foundation is a 501(c)(3) non-profit organization, Tax ID# 91-2073087.


For more information about MoMMA's Voices

please email the Program Manager Nicole Purnell or call the office at 321-421-6957. 

©2019 Preeclampsia Foundation. All rights reserved.

People in crisis should call their local emergency number, physican or the National Suicide Prevention Hotline at 1-800-273-TALK (8255).

MEMBERSHIP POLICY 

 

The purpose of this document is to define the role and responsibility of the Coalition and to ensure there are established governance policies and procedures to assist the Coalition in carrying out its mission.

 

A)  Mission, Vision, and Purpose

1) Mission

A national coalition of patient organizations and individuals with lived experiences or those who represent them, using their voice to reduce maternal complications in pregnancy and the post-partum period.

 

2)  Vision

Eliminate maternal mortality and morbidity in the US.

 

3) Philosophy

Our abiding philosophy is to ensure this coalition comprises patients, survivors and those with the lived experience, rather than healthcare providers, as patient perspective is under-represented in policy, media, professional medical societies, and other agenda-setting conversations.

 

B)  Membership and Representation (See Appendix A for Summary)

1) Composition

The Coalition has various levels of engagement with a wide variety of organizations and individuals. These engagement levels have been outlined within this section.

 

a) Executive Council (goal 7-9 seats, max of 15)

Composition includes organizations representing major contributors to maternal mortality and morbidity along with a diverse representation of individual lived experiences in the US.

 

Executive Council Organizations are the core group of organizational members who hold voting rights on matters related to the Coalition. A voting member from each Executive Council Organization is nominated for the seat held by the organization; these individuals are herein referred to as Executive Council.

 

Membership included both organizations and individuals. Each seat is allocated one vote. Organizational representatives will vote on behalf of their organization.

1) Preeclampsia Foundation

2) AFE Foundation

3) National Accreta Foundation

4) 2020 Mom

5) Every Mother Counts

6) Black Women’s Health Imperative

7) The Shades of Blue Project

8)

9)

                               

b) Member Organizations

Member organizations are non-voting members of the Coalition. Members provide a link of communication between an entity of interest to the Coalition. Composition includes patient centric organizations with missions closely tied to maternal mortality and morbidity and/or having a diverse representation of mothers in the US.

 

Members are invited to attend meetings of the Coalition and may be involved in the discussions of the Executive Council but do not hold voting rights on any matters requiring a vote.

 

c) Member Individuals

Members are invited to attend meetings of the Coalition and may be involved in the discussions of the Executive Council but do not hold voting rights on any matters requiring a vote.

 

d) Supporters

Supporting organizations are non-voting members of the Coalition. Supporters do not have to attend meetings and have no voting rights.  Composition included professional organizations and business/corporate sponsors.

  

2) Selection

a) Executive Council

Organizations or individuals interested in being considered to become a member of the Executive Council should submit an application (template in Appendix) that includes an agreement to meet the obligations of the Executive Council. All applications are carefully reviewed; selection is based upon the defined Member Organization criteria and selections decisions are at the sole discretion of the Executive Council. Executive Council member organizations are expected to be 501(C)3 organizations in good standing.

 

The current Executive Council will review all nominees and reserve the right to refute any nominee via a vote.  Nominations to the Executive Council will require a supermajority acceptance vote.

 

b) Member Organizations

Organizations interested in being considered to become a Member Organization should submit an application (template in Appendix) to the Coalition for consideration. All applications are carefully reviewed; selection is based upon the defined Member Organization criteria and selections decisions are at the sole discretion of the Executive Council. Nominations to join the Coalition will require a majority acceptance vote.

 

c) Member Individuals

Individuals interested in joining the coalition should complete a registration form identifying social media and other channels of influence.  

 

d) Supporters

Organizations interested in being considered to be come a support should submit a letter of interest on organizations letterhead to the Executive Council for consideration. All letters are carefully reviewed and selection is at the sole discretion of the Executive Council.

 

3) Role/Scope of Duties

a) Executive Council

i) Executive Council members are responsible for the management of the affairs of the Coalition, the establishment of Coalition policies, and shall have discretion in the allocation of its funds for its projects. Executive Council members shall have the power to adopt rules and regulations as it deems necessary or desirable for carrying out the activities of the coalition.

 

ii) Each Executive Council member must declare for review and real or perceived conflicts of interest or commitment related to the mission, goals, and objectives of the Coalition and may not engage in activities which may cause real or perceived harm to the Coalition.  The Executive Council will annually review these declarations and act accordingly to assure the success of the council.

 

iii) The Executive Council shall designate a time and place for holding regular meetings of the Executive Council and Coalition.

 

iv) The Executive Council shall have the power to remove Coalition Member Organizations, Executive Council members, Coalition Supporters or Coalition Individuals for cause by a majority vote.

 

v) The Executive Council shall have the power to reinstate a member upon terms as the Council deems appropriate.

 

vi) The Executive Council shall have the power to establish committees of the Coalition where appropriate and necessary.

 

vii) The Executive Council may always inspect and verify the financial records and accounts of the Council.

 

viii) The Executive Council shall approve short and long-term financial goals of the Council.

 

ix) The Governance Committee is responsible for making and presenting revisions to the Policies and Procedures to the Executive Council for review and approval.

 

x) The Executive Council must approve all of the Coalition Policy and Procedures.

 

xi) As the accountable body of governance of the Coalition, the Executive Council shall undertake actions as required to assure the ongoing success of the Coalition.

 

b) Member Organizations

i) Member Organizations shall provide a link of communication between the entity they represent and the Coalition.

 

ii) Attend conference calls and meetings of coalition.

 

iii) Participate in electronic discussions.

 

c) Member Individuals

 

d) Supporters

 

4) Powers

a) Executive Council

Each Executive Council member shall have one (1) vote on all matters requiring the vote of the Council, unless otherwise noted.

 

b) Member Organizations

Member Organizations shall have no vote on any matters requiring the vote of the Council.

 

c)Member Individuals

Individuals shall have no vote on any matters requiring the vote of the Council

 

 d) Supporters

Supporting Organizations shall have no vote on any matters requiring the vote of the Council

 

5) Terms and Removal

a) Executive Council

i) The term of the Executive Council members shall be three (3) years at which time the Coalition will reevaluate membership and objectives.

 

ii) An Executive Council members’ term shall automatically expire upon the filing of a written resignation.

               

iii) An Executive Council member may be removed from office for cause at any time by a majority vote of the sitting Executive Council.

 

b) Member Organizations

i) The term of the member organizations shall be three (3) years at which time the Coalition will reevaluate membership and objectives.

 

ii) A member organizations term shall automatically expire upon the filing of a written resignation.

 

iii) Each Member Organization is reviewed annually and a decision on whether to continue status is reached and communicated to the Member. During this review the Executive Council reserves the right to request additional information as deemed necessary to reach a decision regarding the continuation of the membership status.

 

iv) A Member Organization may be removed for cause at any time by majority vote of the sitting Executive Council.

 

c) Member Individuals

An Individual may be removed for cause at any time by majority vote of the sitting Executive Council.

 

d) Supporting Organizations

A Supporting Organization may be removed for cause at any time by majority vote of the sitting Executive Council.

6) Vacancies

In the event of a vacancy of an Executive Council seat by resignation, or otherwise, the Organization holding the vacant seat will submit for consideration a successor to the Executive Council member vacating the seat. The Executive Council reserves the right to refute any organizations designation by majority vote.

C)  Executive Council

1) The Coalition Executive Council members are selected by the Executive Council members not currently being considered for a position. That is, the Executive Council member may not vote in an election for which they are being considered. All Executive Council members are eligible to run for Chair position on the Coalition. 

2) The Chair shall serve a term of one (1) year.

3) The duties of the Chair are to preside over meetings of the Executive Council, to act as the spokesperson of the Coalition, to direct the affairs of the Coalition, to appoint ad hoc Coalition Committees, and to represent the Coalition when required.

D) Meetings

1) Frequency

The Coalition will schedule at least one (1) in-person meeting per year at a location to be determined by the Executive Council. In addition to the schedule in-person meeting, the Coalition will also hold conference calls to discuss matters of importance at various time throughout the year as deemed necessary.

2) Notice of Meetings

At least sixty (60) days notices shall be given to each Executive Council member prior to the in-person meetings. Conference calls will be schedule with substantial notice whenever possible. However, there may be times when conference calls may need to occur quickly.

3) Travel Expenses

Travel Expenses to and from meetings are to be covered by the member organization or member individual. This included to and from meetings of the Coalition and any incidental expenses, including: ground transportation (taxi, rail, car service, etc.), hotels, meals, and any other expenses related to travel.

In hardship situations, members of the Executive Council may request financial assistance of travel expenses to the annual meeting. Approval of assistance is at the discretion of the Executive Council.

4) Voting

A quorum for any meeting will be a majority of the Executive Council members eligible to vote. All actions will require approval by majority of those eligible to vote unless otherwise stated.

               

E) Reports

Minutes shall be kept during each in-person meeting and conference call and distributed to the Executive Council and Member Organizations as required. Committees of the Coalition shall keep regular minutes of meeting proceedings and report to the Council as required.

F) Funding

1) Revenues for the Coalitions shall be derived from Merck for Mothers funding, Membership Dues, Sponsorships and Event Registration fees.

a) Merck for Mothers funding is preset

b) Annual member organization dues are $500

c) Event registration as set by exec council

d)Sponsorships for the coalition and events

2) Funding for the Coalition that comes from outside sources will have no role in governance.     

3)  Although revenues from membership dues is vital to the Coalition’s continued operation, it is our goal to represent peer-led organizations, individuals, and our allies across the United States and we will not deny membership due to financial hardship. Consideration will be given to those that express interest in reduced or alternative payment structure through the Program Manager. Final decision will be made by the Executive Council.

G) Compensation

The Coalition and Executive Council shall serve without compensations unless compensation is authorized by the Executive Council for services rendered.

H) Procedures for Revision

Revisions

Proposed changes to the Policies and Procedures outlined in this document must be present and adopted by a supermajority acceptance of the current Executive Council.

PRIVACY POLICY

Normal web site usage
MoMMA's Voices Coalition is a program of the Preeclapsia Foundation and therefore all applicable policies apply to the Coalition as well. The Preeclampsia Foundation has a firm commitment to Internet privacy. You can visit most portions of preeclampsia.org without telling us who you are and without revealing any personal information. The only information we collect from a normal web site visit is the name of your Internet Service Provider, the browser and type of machine you are using, the web site that referred you to us, the pages you request and the date and time you request them. We use this information to generate statistics and measure site activity to improve the usefulness of the site to our visitors. 

Currently we are using Google Analytics to analyze the audience of the website and improve our content. No personal information is collected from Google Analytics. For further information on the privacy policy concerning Google Analytics, please go here, 
https://support.google.com/analytics/answer/6004245?hl=en " 

Collection of personally identifiable information
The Preeclampsia Foundation may collect names, email addresses and other personally identifiable data about visitors when such data is voluntarily submitted to preeclampsia.org. For example, our site uses forms for visitors to register or make a donation online. Contact information from these forms is used to send information about preeclampsia or Foundation activity to our visitors. Financial information is used to bill or provide receipts to visitors in connection with their donations. To ensure the security of credit card and personal information, this Web site employs industry-standard security methods, including the Secure Socket Layers (SSL) protocol for the encryption of transmitted data. The Preeclampsia Foundation goes to great lengths to protect the confidentiality and integrity of any personal information you share with us over the Internet.  In instances where we may partner with medical organizations to conduct research on preeclampsia, your participation may be expressly requested, but your permission would be required prior to sharing personally identifiable data with authorized medical organizations.

The Preeclampsia Foundation makes every effort to ensure the secure collection and transmission of sensitive user information using industry accepted data collection and encryption methodologies.

Cookies
We do not use cookies on the majority of our website pages. The donate pages do use "per session" cookies. Per session cookies last only for the life of your current browser load and use no permanent storage on your hard drive. The use of per session cookies is very common in modern Web sites.

DATA AND COMMUNICATION MANAGEMENT POLICY

The Coalition collects and maintains data from the users of its website, attendees of its educational programs, and through other activities necessary to fulfill its mission. This data is a critical resource to the overall success and continued advancement of the Coalition’s programs. Due to its significance, steps must be taken ensure that all collected data is appropriately managed and safeguarded to uphold its integrity and maintain its value. This policy serves to set standards and guidelines about how the data can and should be used.

 

A)  SCOPE

This policy applies to any data collected by the Coalition through its website or by any other means established (i.e. email or paper-based submissions) and through all communication channels (i.e. email or social media).

 

B)  PURPOSE

The purpose of this policy is to support and regulate Coalition collected data. By adhering to the guidelines outlined within this policy the Coalition will ensure that:

 

1)  All data obtained will be utilized appropriately, in a manner that upholds its integrity.

2)  Uncontrolled access to the data is prohibited.

3)  All requests for data access are reviewed and evaluated.

4)  Any content disseminated to Coalition stakeholders is in alignment with the mission of the Coalition.

5)  A culture is established whereby data is seen and upheld as a valuable resource.

 

C)  PROCESSES

The Coalition will maintain the integrity of the data by serving in a gatekeeper role. From its initial data collection, the data will be owned and maintained by the Coalition and can be by freely used by the Coalition for purposes related to carrying out its mission.

 

D)  USAGE REQUESTS

Any usage requests for purposes not directly related to the internal work of the Coalition must be approved by the Coalition Program Manager working on behalf of the Executive Council. Approval by a requesting institution’s institutional review board (IRB) may be required depending on the methods of research proposed. IRB approval is  dependent on an institution’s policies, and is not a required component of this request. Requesting organizations and individuals should check with their institution regarding the need for IRB approval.

 

The request process for both Coalition Organizational Members and others is outlined below.

 

Step 1: Submission of Request

An interested organization or individual submits a letter of interest to the Coalition Program Manager for review.  The letter should include the intended use of the data, requested communication channels, copy of messaging/offer and any other information necessary for the Coalition to reach a decision regarding access.

 

Step 2: Review and Decision 

 All Data Request letters will be reviewed by the Program Manager working at the direction of the Executive Council. Any requests that are considered questionable will be reviewed by the Executive Council. The Coalition will make every attempt to review complete Data Usage Request within four weeks of receipt.

 

Step 3: Notification and Request Execution

After Program Manager review, the requested organization or individual will receive notification regarding the status of the request.

 

All approved requests are managed by Coalition staff. Data will not leave the confines of the Coalition repository. The requesting organization or individual is responsible for submitting the desired content of the distribution. Coalition staff will work directly with the requesting organization or individual on revisions and approvals. Once approved, Coalition staff will be responsible for the distribution of requested information directly to stakeholders.

 

E)  COSTS AND PAYMENTS

The Coalition will not approve requests from industry organizations for the dissemination of promotions related to a product or service.

 

F)  ACCESS PROVISIONS

For the Coalition to utilize stakeholder data in the manner outlined above, explicit language on its potential usage must be provided to stakeholders at the point at which their data is collected.  All communications will offer an opportunity to opt out of further communication.

 

G)  REVISIONS TO POLICY

The Executive Council reserves the right to revise this policy at any time.