GOLD2024

LOWE SYNDROME ASSOCIATION INC

Circle of Care: Vision for a Cure

aka L.S.A.   |   Cincinnati, OH   |  http://www.lowesyndrome.org

Mission

Founded in 1983, the LSA is an international, non-profit organization made up of parents, friends, professionals, and others who are interested in helping children with Lowe syndrome and their families. Lowe syndrome is a rare genetic condition affecting males that results in multiple physical and medical challenges. There is no cure yet today, but many of the symptoms can be treated effectively. With the help of the LSA, researchers have added significantly to the body of knowledge about Lowe syndrome, and parents have benefited greatly from the mutual support and information provided by the organization.

Notes from the nonprofit

We are an rare disease nonprofit organization that strives to be bold in our objectives to find a cure for Lowe Syndrome, efficient with our linted resources and transparent in our actions.

Ruling year info

1986

Principal Officer

Jeri Kubicki Ms.

Main address

8190 Beechmont Ave. Suite 111

Cincinnati, OH 45255 USA

Show more contact info

EIN

31-1160328

NTEE code info

Birth Defects (G20)

Specifically Named Diseases (G80)

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

SOURCE: Self-reported by organization

As a very rare disease nonprofit, we have limited resources to accomplish all the things necessary to holistically support our community- from education and mental health support for caregivers to research funding and patient registry development. That said we have articulated our goals very clearly below. Our current strategic plan is under review and will be included once approved.

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?

Research, patient registry, education, family support, public awareness, fundraising

The LSA shares broad information on our website from the genetic basis of LS, to global resources and access to our patient registry. "Living with Lowe Syndrome: A Guide for Families, Friends and Professionals" is a comprehensive resource for families and professionals regarding life with Lowe syndrome. We host a patient registry and a public awareness campaign focused on members of Congress to grow support for better treatments and someday a cure for LS. We share digital newsletters and host caregiver and other informational zoom sessions. We host an active Community Facebook page to share updates, celebrate individuals with LS and solicit feedback from our community. We do not charge for membership to LSA- we welcome all. We host an international conference every 2-3 years to bring together families, friends, and medical, scientific and other professionals globally for a weekend of learning and sharing.

Population(s) Served
Ethnic and racial groups
Caregivers
Families
Non-adult children
People with disabilities

Where we work

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.

The public is aware of LS.
Research has been increased and accelerated in its progress so that we achieve a meaningful treatment by 2030.
The LS community is connected, united, and empowered by a diverse donor community.
The LSA is the most current and comprehensive resource for LS globally.

Continue congressional office meetings (started in 2023); reapply for appropriations dollars, and seek a champion to introduce a bill that supports LS specific research.
Engage with external groups that provide meaningful outcomes, such as Everyday Life.

Fund new researchers to increase the pool of research for LS.
Continue supporting Dr. Aguilar research in 2024.
Fund the 2024 international research meeting.
Investigate additional clinical registry leveraging Ciitizen and/or RareX.
Complete Charity Navigator, Candid/Guidestar and our first accounting audit to improve our nonprofit status rankings and external donor engagement.
Develop Board of Director Roles in areas of high need and identify committed candidates to fill, including Secretary, Grant/Writing/fundraising, Patient Registry lead.
Investigate development of a legacy fundraising program.
Continue community growth and engagement through LSAs Community Facebook page (renewed in 2023).
Implement social media fundraising pushes for rare disease day, Giving Tuesday, and end of year giving.
Apply for at least 2 grants in 2024 (Rare as One, Everyday Life).
Continue to clean Salesforce database and leverage for donor outreach.
Maintain an annual social media calendar and content plan.
o Share research updates in newsletters and zoom sessions.
o Continue to seek a Neurology expert to engage with LSA.
o Maintain the LSA website with current information.
o Execute contracts for 2025 LS conference.
o Continue to seek volunteers to take accountability for projects.

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 shared information about our current feedback practices.
  • How is your organization using feedback from the people you serve?

    To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, 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, To understand people's needs and how we can help them achieve their goals

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

    We collect feedback from the people we serve at least annually, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We share the feedback we received with the people we serve, We tell the people who gave us feedback how we acted on their feedback

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, The people we serve tell us they find data collection burdensome, It is difficult to find the ongoing funding to support feedback collection

Financials

LOWE SYNDROME ASSOCIATION 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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Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

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

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

LOWE SYNDROME ASSOCIATION INC

Board of directors
as of 05/16/2024
SOURCE: Self-reported by organization
Board chair

jeri kubicki

No Affiliation

John Macdonald

No Affilaiton

Lisa Waldbaum

Cristen Alberts

Theresa Haugen

Clare Gromoll

Laura Kim

Cori DeGori

Barry Ross- Rinehart

jeri kubicki

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? No
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? No
  • 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? No
  • 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? Yes

Organizational demographics

SOURCE: Self-reported; last updated 5/16/2024

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female
Disability status
Person without a disability

Race & ethnicity

Gender identity

No data

Transgender Identity

No data

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 05/08/2024

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. 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.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We have community representation at the board level, either on the board itself or through a community advisory board.