SILVER2023

CURE ADSSL1

Striving for Treatment of ADSSL1 Myopathy

Glendale, CA   |  https://www.cure-adssl1.org

Mission

Mission of the CURE ADSSL1 organization is to invest in research and develop treatment options for patients with rare neuromuscular disease caused by mutation in ADSSL1 gene. We have a patient community that supports each other in sharing knowledge to help manage disease symptoms and quality of life.

Ruling year info

2022

Principal Officer

Priyanka Kakkar

Treasurer

Sanjeev Sehgal

Main address

1929 Calle Dulce

Glendale, CA 91208 USA

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EIN

88-1577647

NTEE code info

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

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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?

Therapeutic Research for ADSSL1 Myopathy

We are a parent-run non-profit foundation with the mission to find a cure for ADSSL1 Myopathy. The impact of this disease on the patients is debilitating with loss of mobility in arms and legs, reduced function of heart, lungs, and swallowing muscles. Impact on patients includes decreased ability to perform activities of daily living and maintain functional independence.

We are working with leading researchers and supporting research for two potential therapeutic options for ADSSL1 Myopathy:

1) Drug Repurposing

2) Gene Replacement Therapy

Population(s) Served
People with physical disabilities

Where we work

Financials

CURE ADSSL1
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Operations

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This organization has no recorded board members.