The ALS Association - DC/MD/VA Chapter

Rockville, MD
This organization has not appeared on the IRS Business Master File in a number of months. It may have merged with another organization or ceased operations.

Mission

This chapter is now merged and part of the Amyotrophic Lateral Sclerosis Association, EIN: 13-3271855, doing business as The ALS Association.

Notes from the nonprofit

Amyotrophic lateral sclerosis (ALS), otherwise known as Lou Gehrig’s disease, is a disease that robs people of the ability to walk, to talk and even blink an eye. People with ALS lose the power to use their legs, hold someone close, and simply say, “I love you.” ALS can strike anyone, anywhere, but military veterans are approximately twice as likely to develop ALS as the general population.

Ruling year info

1990

Executive Director

Ms. Lynn Aaronson

Main address

30 W. Gude Drive Suite 150

Rockville, MD 20850 USA

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Formerly known as

ALS Association - The National Capital Area Chapter

EIN

52-1749047

NTEE code info

Human Service Organizations (P20)

Patient Services - Entertainment, Recreation (E86)

Alliance/Advocacy Organizations (G01)

IRS filing requirement

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

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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?

Patient Services

All services are available free of charge and are funded solely through public donations and special events. These services include:

-- Monthly Support Groups for ALS patients, families, and friends: Five support groups for ALS patients, friends and family members are offered in Fairfax, VA, Washington, DC, Montgomery County and Prince Georges County in Maryland, Ellicott City, MD, Charlottesville,VA, Richmond,VA, and Chesapeake,VA

-- Monthly Caregiver Support Groups: Two support groups are available for people in the national capital region - one in Montgomery County, MD and one in Fairfax, VA.

-- Telephone consultation and one-on-one meetings with patients, caregivers and family members.

-- Medical Equipment Loan Program.

-- Augmentative Communication & Assistive Technology Equipment Loan Program.

-- Home Visits.

-- Respite Care Program - funding for respite care for those caregivers who are unable to afford
outside assistance.

-- Transportation Program - A program that assists PALS with transit to medical appointments and support groups for wheelchair-bound people who do not have transportation of their own.

-- Newsletter - Mailed three times each year and includes information to assist ALS patients.

-- Relationship with ALS Clinic - two Chapter social workers spends one morning per week at the GWU ALS Clinic in Washington,DC working with ALS patients and their families. ALS staff also assist with the Richard Dart Clinic in Charlottesville, VA.

-- Symposiums - Symposiums are offered to ALS patients and families, as well as one symposium specifically for caregivers.

-- In-services to hospice and home health agencies - on going as requested.

-- Lending Library - the Chapter's administrative office, located in Rockville, MD, houses a lending
library of books, videos and reference guides. A volunteer coordinates the library and handles requests for information. Newly diagnosed patients are mailed a packet of information containing
booklets and resources specific to their needs.

-- Referrals to local health care providers

Population(s) Served
People with disabilities

The ALS Clinics and Centers coordinate the best of care from many health care specialties. This "one-stop" approach has proven especially effective for people with ALS who usually have limited mobility and a variety of symptoms. In a single appointment patients receive individualized attention from a variety of skilled medical professionals, including neurology, pulmonology/respiratory therapy, physical therapy, occupational therapy, and speech pathology. These special health care teams are familiar with the unique challenges facing those with ALS, their caregivers and families and help them find renewed hope and a better quality of life.

Population(s) Served
Adults

The ALS Association has committed $99 million to find effective treatments and a cure for Lou Gehrig’s Disease. Our global research effort has helped increase the number of scientists working on ALS, advanced new discoveries and treatments, and has shed light on the complex genetic and environmental factors involved in ALS.

Population(s) Served
Adults

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of clients served

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

People with disabilities

Related Program

Patient Services

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of attendees present at rallies/events

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

People with disabilities

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

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.

GOAL #1 – Strive to improve the quality of life for those affected by ALS by delivering programs and services that empower, educate and support.

GOAL #2 – Increase awareness of the Chapter and gain recognition as the premier source of information and patient and family services in our service area.

GOAL #3 – Expand and diversify our base of financial support to ensure the long-term stability of our organization, growth of patient services, and commitment to ALS research.

GOAL #4 – Support research efforts to identify the cause of and cure for ALS.

GOAL #5 – Strive for a strong, mission-focused, diverse Board of Directors that will guide organizational growth.

1. Services

a. Fund additional ALS Clinics
b. Outreach to healthcare providers and neurologists
c. Increase funding for programs

2. Awareness

a. Outreach to media with PSAs and Press releases
b. Speaker Symposiums

3. Fundraising

a. Increase Walk to Defeat ALS® revenue
b. Implement Dine to Defeat ALS program
c. Increase corporate engagement
d. Increase funding from foundations
e. Increase 3rd Party Event revenue

4. Research

a. Increase The Chapter's contributions for The ALS Association's research project portfolio
b. Cultivate donors who's primary interest is research

5. Board of Directors

a. Grow Board of Directors to 20 members
b. Have Board members open doors to potential corporate partners
c. Find speaking opportunities for Board members
d. Provide fundraising and outreach training to Board members

1. Services

a. Partnerships with current ALS Clinics
b. Current budget of $1.716 million for services
c. Collaboration with local health care providers and community support resources

2. Awareness

a. Partnerships with graphic designers for creating materials
b. PSAs from our national office
c. Media Contacts courtesy of Rasky-Baerlein Strategic Communications
d. Awareness Committee
e. Dedicated communications staff

3. Fundraising

a. Veteran fundraising staff
b. Completed 2 successful Dine to Defeat ALS events
c. Board dedicated to opening doors for corporate engagement
d. Staff member revitalizing relationships with foundations

4. Research

a. $90 million committed through The ALS Association
b. 90 current research projects funded across the world

5. Board of Directors

a. 14 Board members with diverse areas of expertise
b. Thriving Board-led committees
c. Extensive Board outreach and recruitment

1. Services

a. Number of people with ALS we serve - 650
b. Number of home visits Care Services Coordinators make - 873
c. Number of pieces of medical equipment loaned - 324
d. Number of pieces of assistive technology equipment loaned - 66
e. Number of transportation trips granted - 206
f. Value of respite care grants disbursed - 30 grants/ $27,690.91
g. Number of ALS Clinics we partner with - 7 Clinic Partnerships
h. Number of in services or significant contacts with local healthcare or resource providers - 72 in services
i. Number of support groups held - 80 Support Groups Held

2. Awareness

a. Stories about ALS covered by local media
http://www.southbendtribune.com/entertainment/inthebend/eventnews/als-victim-looks-forward-to-event/article_9b4aface-f915-538f-8539-289dd95775ea.html
http://www.roanoke.com/sports/colleges/college-notebook-vmi-assistant-soccer-coach-dies-after-als-battle/article_e26ce63a-3b7f-5247-9e16-5ab1eab9e3c9.html
http://wavy.com/2015/02/05/an-insurance-catch-22-a-fight-for-als-benefits/
http://wavy.com/2015/02/10/insurance-company-grants-woman-with-als-home-care/
http://www.umterps.com/ViewArticle.dbml?ATCLID=209633983
http://www.washingtonpost.com/blogs/dc-sports-bog/wp/2014/08/08/virginia-techs-frank-beamer-virginias-mike-london-accept-the-als-ice-bucket-challenge/
http://www.wusa9.com/story/entertainment/television/2014/10/14/walk-defeat-als-dc/17265387/

c. Number of press releases submitted - 2014

3. Fundraising

a. In part thanks to the Ice Bucket Challenge, we saw dramatic growth in our Fall events, most noticeably leading to an increase of over $150,000 for our Washington, DC Walk to Defeat ALS. We added one new walk event in Shenandoah, VA which raised over $40,000 and added an additional Dine to Defeat ALS event in Virginia Beach, generating an additional $75,000 in revenue for the Chapter.

4. Research

a. The ALS Association has committed $99 million to find effective treatments and a cure for Lou Gehrig's Disease. Our global research effort has helped increase the number of scientists working on ALS, advanced new discoveries and treatments, and has shed light on the complex genetic and environmental factors involved in ALS.

5. Board of Directors

a. Number of Board Members - 16
b. Number of speaking opportunities Board members participated in - 6 Walks and 2 Dinners for a total of 8

Financials

The ALS Association - DC/MD/VA Chapter
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Operations

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

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The ALS Association - DC/MD/VA Chapter

Board of directors
as of 06/11/2024
SOURCE: Self-reported by organization
Board chair

Mr. Paul Ingholt

Scott Golden

Sally Horner

Robert Roseman

Andrew Berman

Richard Bodson

Alethia Baggett

Steve Wellner

Betsy Lichtschein

Judith Bailey

Andrea Kelleher

Craig Rice

Jeff Brainard

Thomas Mohler

Keith Segalman

Scott Evans

Kevin Smith

Zachery Daniel