LYME DISEASE RESOURCE CENTER, Inc.

A Path To Wellness

Northampton, MA   |  www.lymedrc.org

Mission

Our mission is to be a peer guided, supportive and safe place for those living with Lyme Disease and their care partners, sharing strategies and resources for living well.

Notes from the nonprofit

The search for information and support is difficult. With the number of reported cases growing exponentially each year, the need for reliable information is critical. The internet is an important resource utilizing chat rooms, blogs, and other sources of information. However, there are few physical places available to the Lyme patient to turn to for support. Local group support meetings serve an important function, but most are informal gatherings and do not guarantee privacy.
Navigating complex paperwork and insurance policies is nearly impossible for a patient coping with the severe fatigue, brain fog and pain of this chronic condition, which is becoming known as the “Great Imitator”, mimicking many diseases such as multiple sclerosis, ALS, chronic fatigue, fibromyalgia and other non-specific musculoskeletal and neurological diseases. This national crisis is an opportunity to establish a model for a resource center that can be duplicated across the country.
The controversy over treatment and the existence of the chronic form of Lyme Disease combined with the skepticism and sometimes outright hostility, of people not suffering from this disease, a can cause a chronic Lyme patient to feel lost and alone. Care partners experience the same frustration as they try to obtain medical care, benefits and services for the Lyme patient.
The Lyme Disease Resource Center's goal is to educate patients and their care partners about tick-borne disease, treatment options, and community resources. The Lyme Disease Resource Center will accomplish this by providing a local office with a safe and confidential environment in which clients may make informed decisions about treatment and support options. A wide variety of free services will be offered providing training and skills to navigate the medical, government and social issues surrounding Lyme disease, as well as holistic therapies for both Lyme patients and their care partners.

Ruling year info

2014

Executive Director

Ms. Maria Maria Malaguti

Main address

PO Box 171

Northampton, MA 01061 USA

Show more contact info

EIN

46-3986105

NTEE code info

Specifically Named Diseases (G80)

Human Services - Multipurpose and Other N.E.C. (P99)

Alliance/Advocacy Organizations (W01)

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

SOURCE: Self-reported by organization

The Lyme Disease Resource Center provides resources to an underserved population of tick borne illness patients and their care partners. We guide clients to the available resources and information not only for tick borne illness and prevention, but assist in navigating the complications of medical and government support.

Current testing for Lyme Disease and co-infections are unreliable, medical professionals need to be educated as to the growing problem. Our organization creates educational opportunities and provides access to information otherwise unavailable to professional practices and the public.

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?

2 monthly support groups

Virtual facilitated discussion groups, open to the public:
2nd Saturdays: Lyme Support Group. Strategies and resources for living well with tick-borne illness. All are welcome including any persons supporting those with Lyme or tick borne illness.

3rd Wednesdays: Lyme and Chronic Illness
Support and Wellness Group. A facilitated discussion for those with Lyme or chronic illness, to create connection, with the intention of moving towards wellness. All are welcome including any persons supporting those with Lyme or chronic illness.

Population(s) Served
Adults
People with diseases and illnesses

Guest speakers invited to present topics related to tick borne illness, prevention, healing and support.

Population(s) Served
Adults
People with diseases and illnesses

(NOTE: Limited virtual appointments during COVID-19 office closure) Holistic therapies are good for body and soul. We offer a menu of such therapies with the knowledge that they relieve stress and can help clients cope with the pain and discomfort of having a tick borne illness.

They also provide stress relief and comfort to caregivers coping with a loved one’s chronic illness.

As we engage more donors and sponsors for our programs, we will be able to expand our appointments for holistic therapies.

Population(s) Served
Caregivers
People with diseases and illnesses

(NOTE: peer support is temporarily virtual due to COVID-19 office closure) Peer counselors work with clients to gather information and form an individualized action plan. Action plan could include using LDRC database to connect clients with local organizations that may help with specific client needs (Lyme Literate Medical Doctors and practitioners, health connections, Community Action, SNAP, independent living organizations, section 8 or housing assistance, etc.)

Population(s) Served
Adults
People with diseases and illnesses

Where we work

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

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.

Our Vision:

“…to provide clients and care partners with tick-borne disease a place to find guidance and emotional support on a path to wellness"

“…to educate the community by providing: material, forums and workshops on the issues surrounding tick-borne disease."

“…to advocate for better education, knowledge, treatment and awareness of tick-borne diseases."

“…to connect tick-borne disease support and educational groups across Massachusetts and beyond."

As a rural community, Northampton and its local communities benefit by having a central resource to guide individuals and support them in the search for physical, emotional and financial resources.

More specifically, LDRC provides training and skills to navigate the medical, government and social issues surrounding Lyme disease and care-giving.

During hours of operation, the Northampton, Massachusetts based center is staffed by volunteers made up of professional social workers, Lyme patient and care partner peers, and licensed health care professionals familiar with the issues surrounding, disability, caregiving, Lyme Disease and other tick-borne illness. Our organization provides 2 support groups per month, guest presenters that are experts in the health and wellness fields, several free holistic therapy programs for tick borne illness patients and their care partners, as well as educational tables at events and other locations.

We have an established office hours available by appointment at 243 King St. STE. 248 Northampton MA 01060 413-588-7388 and staffed by dedicated volunteers, visible social networking connections on Facebook, Twitter and LinkedIn, as well as a responsive email [email protected] to answer questions from clients.

Calendar of events can be found here: http://www.lymedrc.org/calendar.html

Facebook: https://www.facebook.com/ldrcnoho/

Twitter: https://twitter.com/ldrcnoho

LinkedIn: https://www.linkedin.com/company/lyme-disease-resource-center-inc-

Established an office with 2 support groups monthly

Established and maintained monthly holistic services for clients and their care partners including (but not limited to: Reiki, Lymphatic Drainage Massage, Biodynamic Cranial Sacral, Cuddlist Touch Therapy, and EFT Tapping.

Established email, social networking and phone peer counseling and support for those who are unable to travel due to disability and illness.

Future plans include more community outreach, educational events with CEUs for professionals, and regular walk in hours for the office

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.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person), Case management notes, Suggestion box/email,

  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve,

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders, Our community partners,

  • Which of the following feedback practices does your organization routinely carry out?

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, We don’t have the right technology to collect and aggregate feedback efficiently, The people we serve tell us they find data collection burdensome, It is difficult to find the ongoing funding to support feedback collection,

Financials

LYME DISEASE RESOURCE CENTER, Inc.
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Operations

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

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

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LYME DISEASE RESOURCE CENTER, Inc.

Board of directors
as of 8/13/2021
SOURCE: Self-reported by organization
Board chair

Ms. Maria Malaguti

Lyme Disease Resource Center, Inc.

Term: 2021 - 2022

Dr. John O'Grady

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Not applicable
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Not applicable

Organizational demographics

SOURCE: Self-reported; last updated 8/13/2021,

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

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female
Sexual orientation
Decline to state
Disability status
Person with a disability

Race & ethnicity

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

Equity strategies

Last updated: 02/08/2021

Policies and practices developed in partnership with Equity in the Center, a project that works to shift mindsets, practices, and systems within the social sector to increase racial equity. Learn more

Data
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.