Rett Syndrome Association of Massachusetts Inc

aka Rett Syndrome Angels   |   WALTHAM, MA   |  www.rsangels.org

Mission

Rett Syndrome Angels is an organization of parents, family, and friends committed to making Rett Syndrome history. Formally, we are the Rett Syndrome Association of Massachusetts (RSAM). We have been supporting families throughout New England by providing services, resources, and awareness. In addition; we raise funds towards the advancement of Rett syndrome research.

Ruling year info

2003

President

Lawrence Fallon

Co Principal Officer

Maggie Wurm

Main address

217 SOUTH ST

WALTHAM, MA 02453 USA

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Formerly known as

RSAM

EIN

04-3583648

NTEE code info

Specifically Named Diseases (G80)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

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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?

Blue Sky Day

Every October, families from across the globe celebrate Blue Sky Day as a way to bring awareness to Rett syndrome, a neurological disorder that affects one out of every 10,000 girls born each year and even rarer in boys. Every October from around New England states families come together to climb the steps of Gordon Hall at Harvard Medical School to symbolize their daily struggle and hope for the future. Those who can not walk the stairs are carried with honor by our military, police or fire fighters. The meaning behind climbing the stairs means upward and forward no matter what challenges this disability may bring.

Population(s) Served
People with disabilities
Women and girls
Family relationships
Men and boys

The Rett Syndrome Association of Massachusetts, d.b.a. Rett Syndrome Angels, recognizes the strain that having a child with Rett can put on a family both financially and emotionally. Not only parents and guardians, but siblings of those afflicted with Rett share the daily struggles against Rett Syndrome and make sacrifices to help their brother or sister live a healthier fuller life. In appreciation for all that siblings do for their families, Rett Syndrome Angels are offering up to $2,000 for financial assistance for college for families living in New England states. Rotating yearly application dates.

Population(s) Served
Men and boys
Men and boys

Come join other Rett Syndrome Angels families for an informal evening to chat. Often parents lead the way on conversational topics and some months we have specific topics when needed. These meetings give families opportunities to get much needed support on the many struggles from day to day living with Rett. Wear your pajamas, bring your beverage, snack of choice and get resources, tips or just a lending ear from parents living this journey with you.

Population(s) Served
People with disabilities
Women and girls
People with disabilities
Women and girls
People with disabilities
Women and girls
Men and boys
People with diseases and illnesses

Where we work

Our Sustainable Development Goals

SOURCE: Self-reported by organization

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How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

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Financials

Rett Syndrome Association of Massachusetts Inc
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Operations

The people, governance practices, and partners that make the organization tick.

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Rett Syndrome Association of Massachusetts Inc

Board of directors
as of 3/7/2021
SOURCE: Self-reported by organization
Board co-chair

Lawrence Fallon

President

Term: 2002 -


Board co-chair

Maggie Wurm

Vice President

Term: 2017 -

Irene Gladstone

Secretary

Kathy Schoener

Treasurer

Laura Tempesta

Tracy Freeman

Ariane McMahn

Bonnie Budd

Michelle Boom

Organizational demographics

SOURCE: Self-reported; last updated 3/7/2021,

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

Leadership

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The organization's co-leader identifies as:

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Race & ethnicity

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Sexual orientation

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Disability

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