ALS Association, Connecticut Chapter
4 Oxford Rd
Suite E4
Milford CT 06460
Contact Information
Address 4 Oxford Rd
Suite E4
Milford, CT 06460-
Telephone (203) 874-5050 x
Fax 203-874-7070
E-mail info@alsact.org
Web and Social Media
Mission

To discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.

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
Leadership
CEO/Executive Director Mrs. Sandra Tripodi
Board Chair Mr. Brian Roberson
Board Chair Company Affiliation KPMG
Financial Summary
Revenue vs Expenses Bar Graph - All Years
Statements
Mission

To discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.

Background

ALS causes progressive degeneration of the motor neurons that transmit messages from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. This degeneration ultimately leads to the death of the motor neurons, leaving the brain unable to initiate and control muscle movement. People in the later stages of the disease may become totally paralyzed.

As of yet, there is no cure for ALS. Patients generally don’t survive more than a few years after the onset of symptoms, and during those years they must contend with a relentless loss of physical function. Lou Gehrig, the legendary Yankees’ first baseman, began to experience a decline in strength and dexterity in 1938 and died just three years later. (Since his high-profile case, ALS has also been commonly known as Lou Gehrig’s disease.) Most patients with ALS retain their full mental faculties, even as the disease robs them of their ability to function independently and even to communicate.

Based on U.S. population studies, a little more than 6,000 people in the U.S. are diagnosed with ALS each year. (That's 15 new cases a day.) It is estimated that over 20,000 Americans have the disease at any given time. ALS is a cruel foe, but while science searches for a cure, we have many opportunities to improve quality of life for patients through mental health counseling, adaptive equipment, and access to care. Every day, the ALS Association is seizing these opportunities—and seeking out even more ways to alleviate suffering caused by ALS.

In complement to the groundbreaking research and tireless advocacy that The ALS Association supports on a national level, the Connecticut Chapter (ALSA-CT) is working directly with patients here in Connecticut to improve access to treatment and quality of life. Our goal is to serve every single person statewide with an ALS diagnosis, and we are well on our way. We leveraged momentum from the recent high-profile Ice Bucket Challenge with outreach to key partners in healthcare and the VA medical system, and were able to increase our number of clients from 275 in 2015 to more than 360 in 2017.

Our staff comprises an Executive Director, a Manager of Development, a Manager of Operations and two Master’s level social workers who spend most of their days in the community: at ALS clinics in New Britain, Stamford and New Haven; facilitating support groups throughout the state and online; and in the homes of people affected by the disease, providing compassionate care and a broad array of support services free of charge. These support services include assistance with transportation needs, access to our extensive loan closet of adaptive equipment, and patient assistance grants to support the extenuating needs that families face.

In addition, ALSA-CT provides significant financial support to the only nationally-certified ALS clinic in our state.  The clinic, located at Hospital for Special Care in New Britain, utilizes a multi-disciplinary approach to services for any patient in need. Because access to care is a priority, we also provide financial support for a newly-established ALS clinic in Stamford, operated by Yale New Haven Health, with the goal of providing comprehensive services to the residents of Fairfield County.

Impact In 2017, The ALS Association Connecticut Chapter provided services to over 375 people living with ALS in the state. The Chapter facilitated 66 support groups, both in person and online, provided over 185 pieces of Durable Medical Equipment from our Loan Closet to families living with ALS, and provided 292 medical transportation rides to ALS Clinic appointments and research trials. Additionally, the Chapter funded the only ALS Association Certified Center of Excellence at the Hospital for Special Care, and provided support to ALS Clinics in New Haven and Stamford through Yale. Chapter Social Workers provided support to families as the FDA approved the first treatment in over 22 years, Radicava. The infusion was proven to slow the progression of the disease by 33 percent.
Needs

ALSA-CT has a desire to continue to expand programs to better serve the needs of individuals with ALS. Our key programs including our professional care services, equipment loan closet, home modification programs & transportation programs have the potential for greater utilization and impact with an increase in funding.

To ensure that high-quality medical care is available across the state to people with ALS, we provide significant financial support to several Connecticut clinics, and also make our program staff available on-site at the clinics for face-to-face support and for care coordination between the clinic and the home setting. Expanding this network is always a priority.

Our ALS research program, the world’s largest, is active in more than 150 labs around the globe. From harnessing innovative ideas, to translating concepts to therapies, to advancing treatments for people living with ALS, ALSA’s collaborative and global approach to funding research continues to yield discoveries by top ALS scientists worldwide.

We believe in the power of connecting people with ALS, and their loved ones to state and national lawmakers. Each May, ALSA sends a contingent of patients, family and staff to the National ALS Advocacy Conference in Washington, DC, where they meet with members of Congress to highlight the human stories behind ALS and build support for timely access to care and resources. Our recent success includes a waiver to the Medicare wait time for ALS patients, from 2 years to 5 months.

All of ALSA-CT’s programs and services are provided at no cost to our clients. This is possible through the generosity of individuals, foundations and corporations who believe in our mission and vision. We are always seeking partners with the passion and commitment to help create a world without ALS.

 
CEO Statement

When ALS becomes a reality, it impacts people and their families. In a moment, everything changes and it is an overwhelming process to understand the disease, it’s implications, and the resources that will be necessary for its management. Anyone who has been affected by ALS appreciates the difficult conversations that take place following a diagnosis: conversations with spouses, parents, children. Conversations with employers & insurers. Conversations with medical providers, providers of adaptive equipment, transportation. The ALS care services team can help make those conversations just a little bit easier by helping families to learn what direct support we are able to provide, helping to access other community resources, learning about the role of the medical team, and facilitating difficult conversations. We make sure that no one faces this disease alone. In addition to these critical free services, the ALS Association supports important research and advocates for the needs of people with ALS across the country.

Board Chair Statement

Providing leadership to the CT Chapter of the ALS Association is a pleasure and a privilege. I know first hand the challenges and burden of the disease after having lost my father to ALS. The level of individualized services, the exciting developments in research, and the critical efforts in advocacy all play a key role in reducing the burden of the disease both locally and around the globe.

Service Categories
Primary Organization Category Diseases Disorders & Medical Disciplines / Specifically Named Diseases
Secondary Organization Category Human Services /
Areas Served
State wide
Ansonia
Bethany
Branford
Cheshire
Derby
East Haven
Guilford
Hamden
Lower Naugatuck Valley
Madison
Milford
New Haven
North Branford
North Haven
Orange
Oxford
Seymour
Shelton
Shoreline
Wallingford
West Haven
Woodbridge
We serve the entire state, including greater New Haven and the Lower Naugatuck Valley.  
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, transportation in specially equipped vehicles to medical appointments, support groups, and the services of two Licensed Clinical Social Workers.
Programs
Description

Durable medical equipment—adaptable bathroom assists, mobility devices, hospital beds, recliner lift chairs, and much more—can help support optimal independence and dignity for a person with ALS, as well as ease some of the complexity of caregiving. However, the fast-progressing nature of the disease can make it challenging and costly for individuals and families to keep pace with changing needs for equipment. ALSA-CT has a vibrant durable medical equipment (DME) program available free of charge to all those who are registered with us. Nearly 100% of registered individuals take advantage of our loaner DME program at some point—and often at several points.

 

ALSA-CT coordinates the refurbishment, inventory, pick-up and delivery of donated items throughout the state in collaboration with several trusted nonprofit and for-profit organizations.

 

At ALSA-CT, we know that having access to the right equipment can make a profound difference in patients’ and caregivers’ day-to-day lives. But even when insurance coverage is available for this equipment, cumbersome approval processes often result in long wait times. Our widely-used DME program not only helps relieve some of the financial burden of ALS—it can also get equipment into the homes of people who need it more quickly, so that they can enjoy better quality of life with their friends and loved ones.

Population Served Adults / Other Health/Disability / People/Families with of People with Physical Disabilities
Program is linked to organization’s mission and strategy Yes
Program is frequently assessed based on predetermined program goals Yes
Description


Once a person with ALS is no longer able to transfer from a wheelchair to a vehicle, transportation becomes a significant challenge. Hiring a service to accommodate wheelchair transport can be a financial strain, and individuals and families often don’t know about the services available and which ones will meet their needs.

As always, ALSA-CT is here to help people living with ALS in Connecticut navigate new stages of the disease. We contract with Coordinated Transportation Solutions (CTS), a full-service vendor based in Trumbull, CT, to administer our transportation program. Clients can request transportation to their medical appointments, and we can even provide transportation support for participation in clinical trials or attendance at family events and celebrations.


Population Served People/Families with of People with Physical Disabilities / Adults / Elderly and/or Disabled
Program is linked to organization’s mission and strategy Yes
Program is frequently assessed based on predetermined program goals Yes
Program Success Monitored ByHelpOrganizations describe the tools used to measure or track program impact. Ongoing feedback through follow up emails and phone calls. Surveys are sent each year and promoted through social media, email, and mail to assess the effectiveness of each program.
Description

ALSA-CT’s Master’s-level Care Managers work with our clients to alleviate the burden of ALS wherever possible. Care Managers work directly with patients and their families to create a plan to address the physical, emotional and financial challenges of living with ALS, including identifying resources for needs such as home safety and home modification assessments. Care Managers are available to meet in the client’s home, the ALS clinic, support group settings, or even virtually via FaceTime or Zoom.  Consultation is also available by phone and e-mail. Through individual meetings, family retreats, in-person and online support groups and more, Care Managers employ clinical skills to create and access resources vital to the optimal functioning of people living with ALS, as well as their families and caregivers.

Population Served / /
Description

ALSA-CT wants to ensure that high-quality care is available across the state to people with ALS. To this end, we provide significant financial support to several Connecticut clinics, and also make our program staff available on-site at the clinics for face-to-face support and for care coordination between the clinic and the home setting.

Our partner clinics include: The ALS Association Certified Center of Excellence at Hospital for Special Care in New Britain, Yale Medicine Center for Musculoskeletal Care  in Stamford, and Neuromuscular Program at Yale New Haven, MDA/ALS Multidisciplinary Care Center in New Haven.
Population Served / /
Description

Currently, ALSA-CT offers seven professionally-facilitated support groups throughout Connecticut, with the specific number and location of groups at any given time reflecting the need that we see in different areas of the state. For those who are not able to attend a local group, we also offer an online group, which uses video technology to connect individuals seeking peer support. Participation ranges from about 6-12 per group, and the face-to-face and online groups alike serve as critical outlets for participants coping with ALS, as well as sources of information and mutual support for individuals and families.

Population Served / /
Program Comments
CEO Comments

The strength of our program lies in the intersection between our dedicated and compassionate team at the CT Chapter and the loyalty and generosity donors that make possible it all possible. Our boundaries are limited only by the resources that we have to provide support to a group of people whose needs are great during the course of their illness.

CEO/Executive Director
Mrs. Sandra Tripodi
Term Start May 2017
Email stripodi@alsact.org
Experience
Senior Director, Community Engagement- CancerCare 2004-2014 
Staff
Number of Full Time Staff 4
Number of Part Time Staff 1
Number of Volunteers 50
Number of Contract Staff 2
Staff Retention Rate 100%
Staff Demographics - Ethnicity
African American/Black 0
Asian American/Pacific Islander 0
Caucasian 5
Hispanic/Latino 0
Native American/American Indian 0
Other 0 0
Staff Demographics - Gender
Male 0
Female 5
Unspecified 0
Former CEOs and Terms
NameTerm
Mr Mike Burke May 2013 - Jan 2015
Ms. Lauren D'Alessandro June 2007 - Nov 2014
Senior Staff
Title Care Services Director
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
Collaborations
We partner with Hospital for Special Care Neuromuscular Center, Yale Medicine, NuMotion, NEAT of Oak Hill, and Bullock Access to provide specialized care for people living with ALS.
 
Affiliations
AffiliationYear
Connecticut Association of Nonprofits2014
Affiliate/Chapter of National Organization1988
Awards
Award/RecognitionOrganizationYear
4 Star RatingCharity Navigator2016
4 Star RatingCharity Navigator2017
Comments
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 375 ALS patients and their families each year.
 
Board Chair
Mr. Brian Roberson
Company Affiliation KPMG
Term Feb 2018 to Feb 2019
Board of Directors
NameAffiliation
Mr. Michael Iacurci Law Offices of Mike Iacurci
Mr. Sean Keating RSM
Mr. Paul LaHiff Retired
Mrs. Maureen LaHiff Community Volunteer
Mrs. Susan Leighton Retired
Mr. Todd Marcy Blue Harbour Group
Mrs. Mary Nescott BH Care
Mr. Brian Savo Nantucket Custom Flooring
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 1 N/A
Board Demographics - Gender
Male 7
Female 3
Governance
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
Executive
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.  
 
 
Financials
Fiscal Year Start Feb 01 2018
Fiscal Year End Jan 31 2019
Projected Revenue $878,500.00
Projected Expenses $906,652.00
Credit Line No
Reserve Fund Yes
Documents
Form 990s
9902017
9902016
9902015
9902014
9902013
9902012
9902011
9902010
9902009
9902008
IRS Letter of Exemption
Letter
Detailed Financials
Prior Three Years Assets and Liabilities Chart
Fiscal Year201720162015
Total Assets$1,113,124$1,103,798$1,229,003
Current Assets$452,244$529,473$625,765
Long-Term Liabilities$20,539----
Current Liabilities$40,082$100,654$120,608
Total Net Assets$1,052,503$1,003,144$1,108,395
Prior Three Years Top Three Funding Sources
Fiscal Year201720162015
Top Funding Source & Dollar AmountUnger Foundation $53,546Unger Foundation $49,000 --
Second Highest Funding Source & Dollar Amount --Turner Construction $35,000 --
Third Highest Funding Source & Dollar Amount --Community Health Charities $31,302 --
Capitial Campaign
Currently in a Capital Campaign? No
Capital Campaign Anticipated in Next 5 Years? No
Comments
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. Some financial information from the organization’s IRS Form 990, audited financial statements or other financial documents approved has been inputted by Foundation staff. The Foundation has not audited the organization’s financial statements or tax filings, and makes no representations or warranties thereon. A more complete picture of the organization’s finances can be obtained by viewing the attached 990s and audited financials. 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
Suite E4
Milford, CT 06460
Primary Phone 203 874-5050
Contact Email info@alsact.org
CEO/Executive Director Mrs. Sandra Tripodi
Board Chair Mr. Brian Roberson
Board Chair Company Affiliation KPMG

 

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