RUSFOND USA

Children Shouldn't Have to Die Because of Where They are Born

aka RUSSIAN AMERICAN CHILDREN'S FOUNDATION   |   New York, NY   |  www.racfmiracles.org

Mission

The Russian American Children’s Foundation (RACF) is an American children’s charity that helps children with rare, often deadly diseases, receive groundbreaking American medical care before it’s too late. Their desperate parents watch as they slowly die, while hoping and praying for a miracle. RACF's story is the story of generous, compassionate, hard-working Americans who have the courage to set politics, prejudices, and stereotypes aside to help create a miracle for a child who has no one else to turn to. Thirty percent of these children die before kindergarten. RACF helps saves their lives. Children who would be disabled, now live normal lives. Children facing death now live. Families are forever grateful because their children have new lives through RACF’s life saving programs.

Ruling year info

2013

CEO

Michael Yurieff

Main address

420 Lexington Ave Suite 300

New York, NY 10170 USA

Show more contact info

EIN

45-5394603

NTEE code info

(Patient Services - Entertainment, Recreation) (E86)

IRS filing requirement

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

Sign in or create an account to view Form(s) 990 for 2019, 2018 and 2017.
Register now

Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Russian children with rare, often deadly, diseases have no one to turn to for help. The Russian American Children's Foundation (RACF), founded in 2012 as Rusfond USA, helps these children get the groundbreaking American medical care that will change their lives forever.

RACF raises funds to cover the costs of transportation, food, housing, medical evaluation, testing, hospitalization, and other medical services needed to help Russian children with rare diseases receive treatment at American hospitals until there's a solution for these children in Russia.

A boy with a life-threatening heart defect, a girl without an ear, a child facing blindness from eye cancer – they all have a chance to live a normal life if they can get groundbreaking American medical care in time. These children need complex surgery, state-of-the-art diagnostic testing, financial assistance with travel and hospital stays. RACF is there for them every step of the way.

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?

A WHOLE NEW SOUND - GIVE THE GIFT OF HEARING

Microtia is a rare birth defect, which causes a child to be born with a small, malformed, or missing ear. Only one out of 5,000 babies is born with this condition. RACF works with the California Ear Institute to help Russian children born without ears. American surgeons use advanced surgical techniques to create an ear where there wasn’t one and, more importantly, to give a child the gift of hearing.

Little Vanya was born in Russia without two fully-formed ears. His right ear had only a 50 percent hearing ability. He had no hearing at all in his left ear, which did not have an ear canal. From the age of 5 months, Vanya had to wear a device on his head that amplified sound, but its effectiveness decreased over time. Without groundbreaking American medical treatment, Vanya would soon lose his ability to speak and be forced to live in a world without sound.

Give the gift of hearing to a child like Vanya.

Population(s) Served

In 2012, the Russian Government officially adopts the term “rare diseases” for the first time. Starting in 2013, the government begins funding treatment for 24 rare disease diagnoses. However, worldwide there are over 3,500 known rare diseases. American doctors have the groundbreaking technologies that can save children suffering from these diseases.

Retinoblastoma, for example, is a rare cancer that starts in the retina, at the back of the eye. It is usually diagnosed before a child reaches the age of 3. Although it is the most common type of eye cancer in children, retinoblastoma occurs in only 1 of every 20,000 births. If the tumor is contained within the eye, more than 95 percent of treated patients can be cured.

Ectromelia affects children born with missing or underdeveloped bones. Three-year-old Valeria's right leg did not function at all. Her mother brought her to Florida, where American orthopedic surgeon Dr. Dror Paley reconstructed this little girl's leg in three phases over twelve months. Valeria can now walk and run and lead a normal life!

RACF raises funds to cover the costs of transportation, food, housing, medical evaluation, testing, hospitalization, and other medical services needed to help Russian children with rare diseases receive treatment at American hospitals until there's a solution for these children in Russia. Help make more miracles now!

Population(s) Served

RACF achieves success in helping children with missing ears, rare forms of cancer, and complex heart defects by having emergency cash reserves.

Children shouldn’t have to die waiting for fundraising campaigns, for donations of airline miles so they can fly to the U.S., or for better relations between the U.S. and Russia.

Without emergency funds, some of these children will become disabled for the rest of their lives.

Others will die.

With emergency funds, they can lead normal lives just like any other child their age.

Population(s) Served

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of children receiving medical services

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

Russian children with rare, often deadly, diseases receiving groundbreaking American medical care. These are complex cases requiring expensive, often ongoing treatment as for example with cancer care.

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 Russian American Children’s Foundation (RACF) is an American children’s charity that helps children, whose rare, often deadly diseases, don’t make headlines in the news. Children who have been abandoned by their government, by their health care system, by other charities, and are dying at unprecedented rates.

Critical congenital heart defects, just one of many rare diseases, kills at least 12 of these forgotten children every day. That’s 4,385 children dying unnecessarily every year. The equivalent of the Titanic sinking... two times a year. Every year.

If these children had been operated on as infants, as they are in America, they would be leading normal, healthy lives. But they were born in Russia.

RACF believes that children should not have to die because of where they are born.

Our mission is to help children with rare disease receive groundbreaking American medical care before it's too late.

RACF's story is the story of of generous, compassionate hard-working Americans who have the courage to set politics, prejudices, and stereotypes aside to help create a miracle for a child who has no one else to turn to.

In 2012, the Russian Government officially adopts the term “rare diseases” for the first time. Starting in 2013, the government begins funding treatment for 24 rare disease diagnoses.

However, worldwide there are over 3,500 known rare diseases.

American doctors have the groundbreaking technologies that can save children suffering from these diseases.

The biggest challenge is in paying for the medical treatment.

It’s expensive.

RACF's goal is to help Russian children with rare diseases get life saving American medical care until there is a solution for them in Russia.

RACF achieves success in helping children with missing ears, rare forms of cancer, and complex heart defects by working together with leading children's hospitals, internationally renowned American doctors, and well known charities in the U.S. and Russia.

RACF supports children at leading hospitals across America, including Memorial Sloan Kettering Cancer Center in New York, the California Ear Institute in Palo Alto, California, Boston Children’s Hospital, Cincinnati Children’s Hospital in Ohio, the Children’s Hospital of Philadelphia, and Lurie Children’s Hospital in Chicago. These centers are best equipped to handle the child's specific illness.

Internationally renowned doctors work with RACF to help Russian children. RACF works with eye cancer specialist, Dr. David Abramson; ear surgeon Dr. Joseph Roberson and plastic surgeons Dr. Joseph Reinisch and Dr. Youssef Tahiri; and orthopedic surgeon Dr. Dror Paley among others. Using clinical research and groundbreaking medical techniques, these American doctors give these children their lives back.

RACF helps provide travel assistance, housing assistance, medical evaluation, hospitalization, surgery or other services necessary to help Russian children receive treatment in America for their rare disease. Rare diseases RACF assists with include, but are not limited to, microtia atresia (children born without ears or ear canals), retinoblastoma (eye cancer), and complex heart defects.

Strategic partnerships with leading children’s hospitals such as Cincinnati Children’s Hospital, Boston Children’s Hospital, Memorial Sloan Kettering Cancer Center, the California Ear Institute and well known American charities such as Ronald McDonald House allow RACF to provide the life saving American medical care and logistical support these children need.

RACF negotiates the best rates possible with our partners to help children suffering from rare disease. Leading American specialists help RACF assess each child’s case individually to determine what financial support, logistical assistance, and coordination of services the child needs. RACF offers continuous follow up, emotional support, and guidance to help these families in crisis during their stay in the United States.

A strategic partnership with one of Russia’s most prominent children’s charities, the Russian Assistance Fund, provides RACF families with a crucial funding source. Since 2012, this foundation has wired over $8,000,000 to U.S. hospitals and medical centers for the benefit of RACF families.

RACF is made up of experienced Board members, staff, and medical advisors, who work together to create the best plan and outcome for Russian children seeking American medical care for their rare medical conditions.

RACF studies ways to bring groundbreaking American medical care to Russia by training local doctors and nurses, so that children can be treated right where they live.

Since 2012, RACF has reviewed 108 cases.

Fifty-three families took a leap of faith and traveled to the United States.

Some families have to make multiple trips as part of a series of staged surgeries or for follow-up care.

Since 2012, collectively RACF patients made 156 separate trips to the United States. Virtually every month, another child arrives who needs life changing American medical care.

Of the 53, one child passed away while being treated for a rare form of cancer.

Fifty-two other children are alive and leading better lives today. Their hearing has been restored, their eye cancer cured, their vision saved, and hearts mended.

All thanks to caring, compassionate, generous Americans who are willing to help someone they have never met.

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 collecting feedback from the people you serve?

    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 bright spots and enhance positive service experiences, To inform the development of new programs/projects,

  • With whom is the organization sharing feedback?

    Our board,

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback,

Financials

RUSFOND USA
lock

Unlock financial insights by subscribing to our monthly plan.

Subscribe

Unlock nonprofit financial insights that will help you make more informed decisions. Try our 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.

Operations

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

lock

Connect with nonprofit leaders

Subscribe

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.

lock

Connect with nonprofit leaders

Subscribe

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.

RUSFOND USA

Board of directors
as of 9/6/2019
SOURCE: Self-reported by organization
Board chair

Michael Yurieff

Elena Kuznetova

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 ? Yes
  • 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? Yes

Organizational demographics

SOURCE: Self-reported; last updated 09/06/2019

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
Male
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

No data

Disability