ALS Association, Connecticut Chapter
4 Oxford Rd
Unit D-4
Milford CT 06460
Contact Information
Address 4 Oxford Rd
Unit D-4
Milford, CT 06460-
Telephone (203) 874-5050 x
Fax 203-874-7070
Web and Social Media

To lead the fight to cure and treat ALS through global cutting-edge research, and to empower people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support.

At A Glance
Year of Incorporation 1988
Organization's type of tax exempt status Public Supported Charity
Organization received a competitive grant from the community foundation in the past five years No
CEO/Executive Director Mr. Ken Nicholls
Board Chair Mrs. Dawn Robinson
Board Chair Company Affiliation Barnum Financial
Financial Summary
Projected Revenue $888,500.00
Projected Expenses $945,000.00

To lead the fight to cure and treat ALS through global cutting-edge research, and to empower people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support.

The ALS Association Connecticut Chapter [ALSA-CT] is one of 40 local chapters under the umbrella of The ALS Association, the only non-profit, national voluntary health organization dedicated solely to the fight against ALS, also known as Lou Gehrig’s Disease,.  The fight includes cutting-edge research, compassionate care and support services for patients and their families, public awareness and advocacy.

The national organization was founded in 1985 and maintains offices in Washington, D.C.; Calabasas Hills, CA; and Chicago, IL. The local chapter was incorporated in 1988 and operated for many years with only volunteers, until the first staff was hired in 1999.

Donors dollars are responsible for everything we were able to accomplish over the past year, including:

1.  Served more 240 local ALS patients and families- more than ever before- throughout the state, including greater New Haven and the Naugatuck Valley;

2.  Made 7,550 points of contact, providing compassionate support, programs and services to Connecticut ALS patients, their children and families.  Includes home visits, support groups, equipment delivery and pick-up, phone calls, emails, newsletter and written communication.
3.  Provided major funding for the only ALS-certified clinic at the Hospital for Special Care in New Britain, CT which offers the highest quality multi-disciplinary care to local patients.
4.  Raised significant dollars to fund global research efforts to discover effective treatment options and an eventual cure.
Our Goals for 2014 include:
1.  Increase revenue by 10% in order to continue to meet the growing need for our services.
2.  Formulate a long-term Strategic Plan to establish a framework for financial stability and future growth.
 3.  Continue to implement board recruitement efforts to engage a diverse group of local men and women toward a common goal.

Over the next three years, our priorities include:

1.  Experienced Development staff to significantly increase annual revenue;

2.  Engage the pro-bono services of a qualified professional to work with our board of directors in the areas of professional development, board diversity, and governance;

3.  Develop quatitative measurement tools to measure the effectiveness of our programs and services.

CEO Statement
Working with ALS patients, I have had the opportunity to learn firsthand the  true meaning of the words grace and courage.  This disease took the life of one of the country's greatest athletes, the legendary Lou Gehrig, a true hero in every way.  Nicknamed "The Iron Horse," this strapping, seemingly invincible young man, lost the ability to walk, to communicate and-eventually- to breathe.  Yet, facing this devastating disease, he declared himself  "the luckiest man on earth."
At this time there is no known cure; the prognosis is a 2-5 year lifespan from the date of diagnosis.  Knowing this, ALS patients face the seemingly insurmountable challenges of the disease with strength and bravery; and display immeasurable gratitude for what others do for them and on their behalf. 
Working with families who care for someone with ALS, I've witnessed time and again examples of incomparable love and devotion.  Parents, spouses, children, friends, co-workers, church members and individuals in the community come together to care for ALS patients across the state, the country and the world.  The depth and strength of their commitment is the reason why our chapter continues to succeed in raising much needed funds, despite the economic downturn.  Because of this, each one of them shares our success in fundraising and our ability to serve Connecticut men and women fighting and losing the fight against ALS.
Board Chair Statement
In September 2012, I assumed the leadership position of
President for the Connecticut Chapter of ALS. At the time, we were a board in transition. There had been a Board of Directors in place, many of whom had had a long tenure, and they were departing
and moving on to other community activities.
Prior to being the President, I had assumed the responsibility of
interim-treasurer from more than a year as we looked for other qualified
participants on our Board of Directors.
There wasn’t anyone on the board at the time who really wanted to be
Treasurer and someone had to do it, so I did.

By September of 2012, we had a very morally strong Board of
Directors. We were very committed to our cause. Everyone on the Board of Directors felt, and still feels, that our primary obligation and purpose is to support the families in Connecticut who have a family member suffering from Amotrophic Lateral Sclerosis (ALS), commonly referred to as Lou Gehrig’s disease. This is a fatal and debilitating disease that can cripple a family in many ways. Our goal, like our National Organization, is to allow our clients who are ALS patients, to have as many resources as possible to enrich their own lives as well as their families, all the while finding extra money to put towards research to continue to work towards a cure.
In September of 2012, I had a board that believed in these
goals. As we looked historically at our local chapters’ ability to generate gross revenues above $1 million dollars, annually, we had stagnated over the previous five years. We had shown growth in the time I had been on
the board but it was clear that we were going to have to make adjustments to the organization to move beyond this elusive $1 million goal.

We began a process of exploring additional business
development. The chapter had invested in an extensive strategic plan in 2011 and we then created an operating plan for 2012 and 2013. The board also began to learn and understand how to expand the Board of Directors to recruit the types of professional volunteers that would allow us to attain this goal. Our National Organization provided many
resources and we began to implement a Governance Committee, something that had been explored by previous boards at our chapter and never successfully implemented.

It was clear to me as I assumed the Presidency in September
of 2012 that the right energy was in the organization to make the adjustment for a goal to exceed $1 million in gross annual revenues in the near future (within 3-5 years) and be able to maintain a higher level of funding. We had the right attitude. The group of us that had agreed to work on the Board of Directors all agreed with the objective. We were learning our resources and had tremendous support from our National Organization. I had spent a lot of time in the chapter on a
weekly basis during the year of 2012. I felt that we had a relatively young staff, but that they were also committed to the cause of ALS and very coachable.

I also knew, as I assumed the Presidency, that we were a
transitional Board of Directors. The man
who has become my right arm in this process, Neil Phillips, Vice President of my Board of Directors, also knew we were a transitional Board. In order to push the organization beyond this $1 million in annual gross revenue mark implementing repeatable processes, we were going to have to make adjustments in how we recruited both donors to the
organization and participants on our Board of Directors. Over time we knew the staff would have to grow and the organization would have to diversify its funding opportunities. Neil and I both knew we would be on a path towards burn-out and that an extended tenure would not be appropriate in our positions for this goal. We felt that we needed to create a vibrant and progressive future path as a goal, put the mechanics in place to make it happen, and then allow the organization to move past us with new leadership.

That is exactly what we’re doing.

We are in the process of a regional search for a new Executive Director using the services of a private search firm in collaboration with our National Organization.

We have an amazing interim Executive Director with years of
experience with our National Organization as well as leadership as a retired Executive Director who is helping us revamp our procedural processes and prepare the organization for the new Executive Director.

Our staff is focused and happy. We just held our annual signature event, The Victory Ball, and the staff did a job that was noteworthy and praised by all attendees.

We have just recruited 6 new Board of Director members, all
impressive in their credentials.

Our organization is thriving. We are focused. We know what we want. Most importantly, we are using all of our available resources to create the path for the organization to meets its core belief: supporting the families who are affected by ALS in Connecticut as well as working towards a cure.

The Chapters By-Laws encourage short terms and I am a big
believer in that. Neil believes in it. Our Board supports it. Neil and I, as well as 3 other current Board Members, will be transitioning to advisory capacity in September of 2014. We will continue to participate as advisors and offer our opinions and support to our Chapter but nothing will make us happier than if the board and chapter grow well beyond our expectations and can’t even remember who we are 10 years from now. We will leave 3 seasoned board members in place to assume leadership with the six new board members.

Our intended legacy with respect to governance has been to
make the appropriate adjustments to staff and board that will allow us to reach our commitment to support the ALS patients in Connecticut as well as creating financial resources to donate in support of a cure.
 Dawn Robinson


ALSA-CT Board of Directors


Service Categories
Primary Organization Category Diseases Disorders & Medical Disciplines / Specifically Named Diseases
Secondary Organization Category Human Services /
Areas Served
State wide
We serve the entire state, including greater New Haven and the Lower Naugatuck Valley.  Patients include men and women as young as 30 and as senior as 87.
CEO/Executive Director/Board Comments
If you or someone you know has received an ALS diagnosis and lives in Connecticut, that person and their family are eligible to receive a host of services at no charge.  This includes loan of durable medical equipment and communication devices, reimbursement for Respite Care or Transportation in specially equipped vehicles to medical appointments, support groups, and the services of an experienced Licensed Clinical Social Worker.

Use of vital medical equipment, such as wheelchairs, lifts, ramps and communication devices that enhance patients' mobility, communication and  quality of life.

Population Served / /

Pay for transporation to medical appointments for ALS patients confined to wheelchairs.  In 2013, we accommodated 59 wheelchair transportation trips for 28 patients. We also expanded this program to include transportation to significant family occasions such as graduations, weddings, grandson’s first Little League game.

Population Served / /
Reimburse for the cost of a substitute caregiver in order to allow family caregiver time away to rest and refresh and resume caring for loved one.
Population Served / /

Regular monthly meetings to share inform and educate on patient care, progress in research and disease progression as well as provide a supportive environment that encourages giving and receiving moral support from one another.

Population Served / /
Provide a host of activities that help children cope with the challenges of an ALS diagnosis of a loved one.  Includes self-directed backpacks with books and toys that encourage communication and understanding; helping to cover the cost of summer camp and educational enrichment opportunities; getaways that create lifelong memories with a parent or grandparent; services of licensed clinical social worker to help children and families deal with changes in family dynamics.
Population Served / /
The Chapter provides significant funding for the only ALS-certified medical center in the state where doctors and medical staff collaborate on multi-disciplinary approach to symptom management while researchers conduct clinical trails in areas that can result in effective treatment and eventual cure.
Population Served / /
Program Comments
CEO Comments
We estimate that we are currently reaching and working with 70% of the men and women in Connecticut living with an ALS diagnosis.  The challenge is to continue to realize sufficient revenue to meet the growing need.  We have addressed this by increased visibility via Internet as well as in our immediate and geographical area and statewide and implementing innovative fundraising efforts.  
CEO/Executive Director
Mr. Ken Nicholls
Term Start Jan 2014
Interim Executive Director - search for permanent ED currently taking place.
Number of Full Time Staff 4
Number of Part Time Staff 2
Number of Volunteers 150
Number of Contract Staff 0
Staff Retention Rate 100%
Staff Demographics - Ethnicity
African American/Black 0
Asian American/Pacific Islander 0
Caucasian 5
Hispanic/Latino 1
Native American/American Indian 0
Other 0 0
Staff Demographics - Gender
Male 0
Female 6
Unspecified 0
Former CEOs and Terms
Ms. Lauren D'Alessandro June 2007 - Nov 2014
Mr Albert May Sept 2006 - Mar 2007
Senior Staff
Title Care Services Coordinator
Title Events Coordinator
Formal Evaluations
CEO Formal Evaluation Yes
CEO/Executive Formal Evaluation Frequency Annually
Senior Management Formal Evaluation Yes
Senior Management Formal Evaluation Frequency Annually
Non Management Formal Evaluation Yes
Non Management Formal Evaluation Frequency Annually
We work closely with and provide financial support to The ALS/Motorneuron Clinic at Hospital for Special Care in New Britain.  They provide state of the art, multi-disciplinary care to ALS patients throughout the state.
We are members of, work closely with, and receive financial support from both Community Health Charities and the United Way.
Connecticut Association of Nonprofits2014
3-Star RatingCharity Navigator2013
CEO Comments
The ALS Association Connecticut Chapter has been in existence since 1988, operating for the first decade through volunteers.  First staff , Executive Director, added in 1999.  In that short period of time, we have grown to a staff of five, plus two equally dedicated contract personnel. Currently we provide a broad range of services to approximately 200 ALS patients and their families each year.
We have had three successful years- revenue wise- and have created a Cash Reserve equal to more than twelve months operating costs.  Our biggest challenge is Outreach to more medical professionals in order to encourage them to refer ALS patients to receive vital services and programs.  We are striving to reach more ALS patients and families directly, in order to communicate our services and ability to enhance their lives.
Board Chair
Mrs. Dawn Robinson
Company Affiliation Barnum Financial
Term Sept 2012 to Sept 2014
Board of Directors
Mr. Scott Anderson
Mr. Chris Capobianco
Dr. Kevin Felice ALS Clinic/Hospital for Special Care
Mrs. Susan Leighton
Mrs. Mary Nescott
Mr. Neil Phillips
Mr. Brian Savo
Mr. Kerry Sheltra Numotion
Board Demographics - Ethnicity
African American/Black 0
Asian American/Pacific Islander 0
Caucasian 9
Hispanic/Latino 0
Native American/American Indian 0
Other 0 0
Board Demographics - Gender
Male 6
Female 3
Board Term Lengths 3
Board Term Limits 2
Written Board Selection Criteria Under Development
Written Conflict of Interest Policy Yes
Percentage Making Monetary Contributions 100%
Percentage Making In-Kind Contributions 50%
Constituency Includes Client Representation Yes
Board Co-Chair
Mr. Neil Phillips
Term Sept 2012 to Sept 2014
Standing Committees
Program / Program Planning
CEO Comments
For many years our board has consisted of individuals personally touched by the disease and committed to serve other ALS patients and families as well as find a cure.  We are in a transition phase to a more hands on group with a focus on fundraising and strategic planning.
Fiscal Year Start Feb 01 2014
Fiscal Year End Jan 31 2015
Projected Revenue $888,500.00
Projected Expenses $945,000.00
Form 990s
IRS Letter of Exemption
IRS letter
Detailed Financials
Prior Three Years Revenue Sources ChartHelpThe financial analysis involves a comparison of the IRS Form 990 and the audit report (when available) and revenue sources may not sum to total based on reconciliation differences. Revenue from foundations and corporations may include individual contributions when not itemized separately.
Fiscal Year201320122011
Foundation and
Corporation Contributions
Government Contributions$0$0$0
Individual Contributions------
Investment Income, Net of Losses$23,720$24,284$48,152
Membership Dues------
Special Events$475,315$360,914$443,842
Revenue In-Kind------
Prior Three Years Expense Allocations Chart
Fiscal Year201320122011
Program Expense$590,355$594,928$573,369
Administration Expense$58,372$64,663$62,030
Fundraising Expense$132,731$126,685$92,580
Payments to Affiliates------
Total Revenue/Total Expenses1.070.981.12
Program Expense/Total Expenses76%76%79%
Fundraising Expense/Contributed Revenue17%17%12%
Prior Three Years Assets and Liabilities Chart
Fiscal Year201320122011
Total Assets$883,154$789,255$813,653
Current Assets$110,612$72,830$70,826
Long-Term Liabilities----$1
Current Liabilities$62,481$31,011$41,504
Total Net Assets$820,673$758,244$772,149
Prior Three Years Top Three Funding Sources
Fiscal Year201320122011
Top Funding Source & Dollar Amount -- --Community Health Charities $87,275
Second Highest Funding Source & Dollar Amount -- --Unger Foundation $25,000
Third Highest Funding Source & Dollar Amount -- --Countess Moira Foundation $25,000
Short Term Solvency
Fiscal Year201320122011
Current Ratio: Current Assets/Current Liabilities1.772.351.71
Long Term Solvency
Fiscal Year201320122011
Long-Term Liabilities/Total Assets0%0%0%
Capitial Campaign
Currently in a Capital Campaign? No
Capital Campaign Anticipated in Next 5 Years? No
CEO Comments
We have done extremely well over the last two years, enabling the Chapter to establish the first Cash Reserve.  More than 50% of our revenue comes from individuals/volunteers who participate in our WALK events. 
Our challenge is to create and implement an effective Major Donors program and to enhance the effectiveness of our two annual appeals.
Foundation Staff Comments

This profile, including the financial summaries prepared and submitted by the organization based on its own independent and/or internal audit processes and regulatory submissions, has been read by the Foundation.  The Community Foundation is continuing to receive information submitted by the organization and may periodically update the organization’s profile to reflect the most current financial and other information available. The organization has completed the fields required by The Community Foundation and updated their profile in the last year. To see if the organization has received a competitive grant from The Community Foundation in the last five years, please go to the General Information Tab of the profile.


Address 4 Oxford Rd
Unit D-4
Milford, CT 06460
Primary Phone 203 874-5050
Contact Email
CEO/Executive Director Mr. Ken Nicholls
Board Chair Mrs. Dawn Robinson
Board Chair Company Affiliation Barnum Financial


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