Birds for Sofia Inc

the birds of hope fly where they are needed most

aka Birds for Sofia Foundation   |   Houston, TX   |  birdsforsofia.org

Mission

We support children diagnosed with rare, inheritable diseases from different parts of the world. We help families to get access to life-saving treatments. We fast-forward the fundraising process before it is too late.

Ruling year info

2021

Principal Officer

Zina Lara

board member

Nataliya Miller

Main address

17350 State Highway 249 Ste 220

Houston, TX 77064 USA

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EIN

87-2182454

NTEE code info

Fund Raising and/or Fund Distribution (G12)

IRS filing requirement

This organization is required to file an IRS Form 990-N.

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?

SMA Program

Spinal muscular atrophy (SMA) is a fatal genetic disease. SMA affects approximately one in every ten thousand babies born each year. If untreated, most of them do not live past two years of age.

One of the leading medicines to treat SMA, Zolgensma (by Novartis), is recognized by the Guinness Book of World Records as the most expensive medicine in the world ($2.1 million per one injection).

Zolgensma replaces the function of the missing or non-working SMN1 gene with a new working copy of the human SMN1gene. In essence, it halts the disease at its root.

Zolgensma's accessibility is extremely low due to its astronomically high cost. Today, in many parts of the world, hundreds of SMA-afflicted children cannot receive the gene-based therapy they desperately need to survive.

The "Birds for Sofia" helps families when the need for commercial purchase of Zolgensma is demonstrated and the child meets the prescription criteria. Ex: neurologist's recommendation with denied insuranc

Population(s) Served
Age groups
Infants and toddlers
Non-adult children

Where we work

Financials

Birds for Sofia Inc
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Operations

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

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Birds for Sofia Inc

Board of directors
as of 3/3/2022
SOURCE: Self-reported by organization

Dina Minibaeva

Ilya Musaev

Nataliya Miller

Organizational demographics

SOURCE: Self-reported; last updated 01/24/2022

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, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

The organization's co-leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data