Birds for Sofia Inc
the birds of hope fly where they are needed most
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
2021
Principal Officer
Zina Lara
board member
Nataliya Miller
Main address
17350 State Highway 249 Ste 220
Houston, TX 77064 USA
EIN
87-2182454
NTEE code
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
Our programs
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
Where we work
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Financials
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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 directorsas of 03/03/2022
Dina Minibaeva
Ilya Musaev
Nataliya Miller
Organizational demographics
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
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Sexual orientation
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Disability
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