Sonya's Story

Phoenix, AZ   |  http://www.sonyasstory.com

Mission

Sonya's Story was created to spread awareness of a rare genetic disorder known as CDKL5 and all that comes with having a mutation on a CDKL5 gene. Our purpose is to also raise money to help fund research to hopefully one day find a cure so no child has to suffer from debilitating seizures, GI discomforts, Cortical Vision Impairment and various other problems that come with having a mutation on the CDKL5 gene.

Ruling year info

2016

Principal Officer

Randi Zaila

Main address

6748 N 19th Street

Phoenix, AZ 85016 USA

Show more contact info

EIN

81-4172268

NTEE code info

Diseases, Disorders, Medical Disciplines N.E.C. (G99)

Specifically Named Diseases Research (H80)

Public Foundations (T30)

IRS filing requirement

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

Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Due to the recent identification of the CDKL5 gene, there has not been significant research done to help professionals help manage those diagnosed with mutations. Along this same notion awareness of CDKL5 is in its early stages and the more awareness we can bring to these mutations the better it will be for all impacted and to help diagnose those who may be unaware of these types of mutations.

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?

Maintaining Harper's Cell Line

The money we are raising is going towards an International Foundation for CDKL5 Research initiated project. Harper's contribution was her organs and we have been raising money to help keep her alive so that IFCR's money can be used for the actual research needed

Population(s) Served

We are excited to walk and fundraise for Walk For Wishes. Together, we can raise money for Make-A-Wish to help grant the wishes of children with critical illnesses. Their wishes and diagnoses may vary, but something unites each of them: the need to feel optimistic and to think about something greater than their next medical treatment.

These life-changing wishes are only possible because of supporters like us. A wish experience can truly change a child’s life, and so can we.

Join our team or make a donation today!

Population(s) Served

One of Sonya's Story's goals is to raise money each year to provide 2 wagons with CDKL5 license plates to promote awareness of CDKL5 at Phoenix Children's Hospital

Population(s) Served

Each year Sonya's Story fundraises to help support our local Ryan House establishment that works on providing respite care for children with terminal/life limiting diagnoses.

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 websites and organizations (outside of our organization) that share our resources and information

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

Output - describing our activities and reach

Direction of Success

Increasing

Average online donation

This metric is no longer tracked.
Totals By Year
Related Program

Maintaining Harper's Cell Line

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

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.

1. To spread awareness of CDKL5
2. To raise money to support research efforts to help find a cure for CDKL5 3. To help other non-profit organizations that directly impact those affected with CDKL5 mutations

1. Passing out Sonya's Story cards that explain what CDKL5 is
2. Blogging and sharing information on www.sonyasstory.com
3. Using social media to raise awareness of CDKL5
4. Having fundraising events

1. www.sonyasstory.com-website to help spread awareness
2. Printed Sonya's Story information cards
3. Social Media accounts

We have slowly been spreading more awareness by reaching new people weekly on social media evident by the amount of likes that are on the facebook page. We have been having fundraisers that have been successful, evident by the amount of money we have been raising.

We have currently raised and sent off $5,000 to help maintain Harper's cell line at UCSan Diego for 2017.

We have been successful in our numerous Facebook campaigns bringing in the majority of our organization's revenue in 2018 and 2019.

Financials

Sonya's Story
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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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  • 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.

Sonya's Story

Board of directors
as of 10/17/2019
SOURCE: Self-reported by organization
Board chair

Randi Zaila

Alyssa Zupnick

Pat Schwabinger

Organizational demographics

SOURCE: Self-reported; last updated 10/16/2019

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
Female

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data