Board of Directors: Director-at-Large

Board of Directors: Director-at-Large

Director-at-Large Summary

The Board of Directors for the MSA Coalition serves as the strategic direction-setting body, stewards of resources and allocation, and overall programming oversight. The Director shall serve as a fiduciary of the organization, working with other members of the Board and staff to realize the MSA Coalition’s mission, vision, and overarching strategy.

 

Why Apply

You will have a unique opportunity to impact multiple system atrophy patients, caregivers, research, and the entire community. As a strategic leader with the MSA Coalition, your talent, energy, and dedication will help the organization meet our strategic goals and objectives. You will engage with passionate individuals who this rare disease has touched, and you are driven to help those in need and work towards finding a cure.

Qualifications

  • Ability to attend all MSA Coalition virtual board meetings.
  • Ability to attend the MSA Annual Conference. Note: 2022 will be a virtual event held Sept. 29-Oct. 1, with 2023 planned to resume as an in-person meeting.
  • Commitment to make an annual personal financial contribution to the Coalition commensurate with financial means.
  • Ability to engage in MSA Coalition leadership communications via email or online forums in a timely manner.

Highly Desired Competencies, Skills, and Attributes
Desired experience, skills, and interests include but are not limited to:

  • Demonstrated MSA Coalition volunteer experience
  • Business expertise
  • Relevant educational background
  • Financial/accounting proficiency
  • Fundraising capacity
  • Leadership skills
  • Marketing/media knowledge
  • Non-profit volunteer experience
  • Patient/caregiver support
  • Social media presence
  • Ethics
  • Volunteer network building
  • Collaborative spirit
  • Strong communication skills
  • Commitment to the MSA Coalition’s mission

Summary of General Role and Responsibilities

  • Serves as a fiduciary of the organization
  • Participates in collaboration with officers and board members in the general oversight of the affairs of the MSA Coalition
  • Support MSA Coalition Committees, task forces, or work groups at the appointment of the MSA Coalition Chair
  • Individuals should be prepared to develop relationships, identify, and solicit potential funders, and directly invest in the Coalition’s work through personal donations within their means.
  • Performs other duties as assigned by the Board and/or Executive Committee

Time Commitment

  • Must attend Board orientation sessions, held virtually
  • Must attend the 2023 MSA Coalition board meeting held in conjunction with the Annual Conference
  • Attend four or five virtual board meetings throughout the year
  • Additional time commitment may vary based upon assignment and responsibilities
  • The estimated average monthly time commitment is 4 to 10 hours per month

Term
The Director term is a three (3) year commitment, with an option to renew for one additional term for a total of six (6) consecutive years.

How to Apply
Please use our online application. If you have any questions, please contact info@multiplesystematrophy.org.

Please submit your completed application by October 25, 2022.

Board of Directors: Director-at-Large

Board of Directors: Care Partner Representative

Care Partner Representative Summary
The Board of Directors for the MSA Coalition serves as the strategic direction-setting body, stewards of resources and allocation, and overall programming oversight. The Care Partner Representative shall serve as a fiduciary of the organization, working with other members of the Board and staff to realize the MSA Coalition’s mission, vision, and overarching strategy.

Why Apply
You will have a unique opportunity to impact multiple system atrophy patients, care partners, research, and the entire community. As a strategic leader with the MSA Coalition, your talent, energy, and dedication will help the organization meet our strategic goals and objectives. You will engage with passionate individuals who this rare disease has touched, and you are driven to help those in need and work towards finding a cure.

Qualifications

  • A current care partner of a patient with multiple system atrophy.
  • Ability to attend all MSA Coalition virtual board meetings.
  • Ability to attend the MSA Annual Conference. Note: 2022 will be a virtual event held Sept. 29-Oct. 1, with 2023 planned to resume as an in-person meeting.
  • Commitment to make an annual personal financial contribution to the Coalition commensurate with financial means.
  • Ability to engage in MSA Coalition leadership communications via email or online forums in a timely manner.

Highly Desired Competencies, Skills, and Attributes
Desired experience, skills, and interests include but are not limited to:

  • Demonstrated MSA Coalition volunteer experience
  • Business expertise
  • Relevant educational background
  • Financial/accounting proficiency
  • Fundraising capacity
  • Leadership skills
  • Marketing/media knowledge
  • Non-profit volunteer experience
  • Patient/care partner support
  • Social media presence
  • Ethics
  • Volunteer network building
  • Collaborative spirit
  • Strong communication skills
  • Commitment to the MSA Coalition’s mission

Summary of General Role and Responsibilities

  • Serves as a fiduciary of the organization
  • Provide a current care partner’s perspective and insight into the MSA Coalition strategy
  • Participates in collaboration with officers and board members in the general oversight of the affairs of the MSA Coalition
  • Support MSA Coalition Committees, task forces, or work groups at the appointment of the MSA Coalition Chair
  • Individuals should be prepared to develop relationships, identify, and solicit potential funders, and directly invest in the Coalition’s work through personal donations within their means.
  • Performs other duties as assigned by the Board and/or Executive Committee

Time Commitment

  • Must attend Board orientation sessions, held virtually
  • Must attend the 2023 MSA Coalition board meeting held in conjunction with the Annual Conference
  • Attend four or five virtual board meetings throughout the year
  • Additional time commitment may vary based upon assignment and responsibilities
  • The estimated average monthly time commitment is 4 to 10 hours per month

Term
The Care Partner Representative term is a one (1) year commitment, with an option to renew for one additional term for a total of two (2) consecutive years.

How to Apply
Please use our online application. If you have any questions, please contact info@multiplesystematrophy.org.

Please submit your completed application by October 25, 2022.

 

Board of Directors: Director-at-Large

Board of Directors: Patient Representative

Patient Representative Summary
The Board of Directors for the MSA Coalition serves as the strategic direction-setting body, stewards of resources and allocation, and overall programming oversight. The Patient Representative shall serve as a fiduciary of the organization, working with other members of the Board and staff to realize the MSA Coalition’s mission, vision, and overarching strategy.

Why Apply
You will have a unique opportunity to impact multiple system atrophy patients, caregivers, research, and the entire community. As a strategic leader with the MSA Coalition, your talent, energy, and dedication will help the organization meet our strategic goals and objectives. You will engage with passionate individuals who this rare disease has touched, and you are driven to help those in need and work towards finding a cure.

Qualifications

  • A current patient with multiple system atrophy.
  • Ability to attend all MSA Coalition virtual board meetings.
  • Ability to attend the MSA Annual Conference. Note: 2022 will be a virtual event held Sept. 29-Oct. 1, with 2023 planned to resume as an in-person meeting.
  • Commitment to make an annual personal financial contribution to the Coalition commensurate with financial means.
  • Ability to engage in MSA Coalition leadership communications via email or online forums in a timely manner.

Highly Desired Competencies, Skills, and Attributes
Desired experience, skills, and interests include but are not limited to:

  • Demonstrated MSA Coalition volunteer experience
  • Business expertise
  • Relevant educational background
  • Financial/accounting proficiency
  • Fundraising capacity
  • Leadership skills
  • Marketing/media knowledge
  • Non-profit volunteer experience
  • Patient/caregiver support
  • Social media presence
  • Ethics
  • Volunteer network building
  • Collaborative spirit
  • Strong communication skills
  • Commitment to the MSA Coalition’s mission

Summary of General Role and Responsibilities

  • Serves as a fiduciary of the organization
  • Provide a patient perspective and insight into the MSA Coalition strategy
  • Participates in collaboration with officers and board members in the general oversight of the affairs of the MSA Coalition
  • Support MSA Coalition Committees, task forces, or work groups at the appointment of the MSA Coalition Chair
  • Individuals should be prepared to develop relationships, identify, and solicit potential funders, and directly invest in the Coalition’s work through personal donations within their means.
  • Performs other duties as assigned by the Board and/or Executive Committee

Time Commitment

  • Must attend Board orientation sessions, held virtually
  • Must attend the 2023 MSA Coalition board meeting held in conjunction with the Annual Conference
  • Attend four or five virtual board meetings throughout the year
  • Additional time commitment may vary based upon assignment and responsibilities
  • The estimated average monthly time commitment is 4 to 10 hours per month

Term
The Patient Representative term is a one (1) year commitment, with an option to renew for one additional term for a total of two (2) consecutive years.

How to Apply
Please use our online application. If you have any questions, please contact info@multiplesystematrophy.org.

Please submit your completed application by October 25, 2022.

Board of Directors: Director-at-Large

Advocacy Committee

Brief Description
The MSA Coalition Advocacy Committee supports the organization’s advocacy agenda through public policy, awareness, advocacy, and community initiatives.

What does a member of the Advocacy Committee do?
Members of the Advocacy Committee support the overall advocacy strategy of the organization by providing knowledge, feedback, active engagement with stakeholders within and outside the MSA community and enhancing awareness of multiple system atrophy at the local, state, and federal levels.

Examples of contributions may include:

  • Support the development of the annual advocacy agenda based on organizational objectives and the shifting legislative landscape.
  • Develop resources and materials to enhance awareness and outreach efforts to elected officials.
  • Monitor local and state legislation with potential impact on MSA patients and their families.
  • Engage with elected officials at the municipal, state, and federal levels to provide insight on legislation that may affect the multiple system atrophy community.

What type of volunteer(s) are you looking for this year?
The Advocacy Committee is a nimble volunteer body, designed to be efficient, responsive, and diverse to ensure the MSA Coalition is effective in our advocacy efforts and meeting annual outcomes. To that end, this year we are searching for the following specific perspectives and skills to enhance our committee:

  • Patient member – you are a current MSA patient with an interest in advocacy and increasing awareness of multiple system atrophy to elected and public officials.
  • Care Partner member – you are a current or recent care partner (within the past five years) for an MSA patient.
  • Experienced advocacy member – you have personal, professional and/or volunteer experience with public policy, advocacy, and the legislative process.

General qualifications for the committee include:

  • Interest in advocacy, public policy, community initiatives, coalition-building, and enhancing external organizational network.
  • Ability to respond to Committee communications in a timely manner.
  • Strong communication and research skills to understand current and pending legislation.
  • Access and schedule flexibility to attend regularly scheduled virtual committee meetings.

What is the time commitment?
We estimate 2 – 4 hours of volunteer time to committee work per month, which may vary based upon assignments and time of year.

Each committee member shall serve a two-year term to support continuity, with an option to renew for one additional term.

What skills and leadership competencies will I develop?
As a key contributor to the work of the MSA Coalition’s advocacy initiatives, there will be an opportunity to acquire and develop important leadership competencies and skillsets during your time on the committee.

  • Virtual and in-person presentation skills
  • Communication
  • Teamwork
  • Leadership and motivating others

You will also gain firsthand insight into the MSA Coalition, be able to network and connect with fellow volunteer leaders and contribute your expertise to advance the organization’s strategic plan.

How to Apply
Please use our online application. If you have any questions, please contact info@multiplesystematrophy.org.

Please submit your completed application by October 25, 2022.

In Memory of My Father, Kenneth Robert Treat

In Memory of My Father, Kenneth Robert Treat

By Robert Treat

I lost my dad, Kenneth Treat in 2009 after a diagnosis of Multiple System Atrophy, although since he died, I’ve often wondered if there wasn’t some Lewy body involvement.

My father was born on September 7, 1930. He was an Episcopal priest from 1955 to 1996. The circumstances of his passing were horrific. After returning from a vacation celebrating their 50th wedding anniversary, Dad started getting increasingly dizzy, and they thought he had benign positional vertigo.
In March 2009 they changed the diagnosis to Parkinson’s Disease, but he continued to suffer falls. They took him to a hospital where he got a Multiple System Atrophy diagnosis, and he was shuttled back and forth between the nursing home and the hospital until he went into septic shock. He died on May 3, 2009.

I’d like to share a few photos of my dad; one of him starting a job at St. Albans in 1974; of him with his grandson Bill in 1984, of him as a rector in clericals in the mid 1990s and; and a family photo taken for my parents’ 50th anniversary in September 2005.