PLATINUM2024

Sonya's Story

Sonya's Story CDKL5

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

6101 N 5th Place

Phoenix, AZ 85012 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?

Make A Wish Arizona

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
Children and youth

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
Adults

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
Families
Children and youth

We recently started to supply appropriate fleece open foot zipper sleeper pajamas to children who are an inpatient at Phoenix Children's Hospital's Pediatric Epilepsy Monitoring Unit (8th Floor).

Population(s) Served
Young adults
Children and youth
People with disabilities

Planning an inclusive playground on the Phoenix Hebrew Academy campus so all children are able to participate in recess no matter their abilities.

Population(s) Served

Cleaning Bethany Home Road between 7th-16th street 4 times a year

Population(s) Served
Children and youth
Children and youth
Adults
Non-adult children

Where we work

Videos

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
Population(s) Served

Adults, People with disabilities, Chronically ill people, Terminally ill people

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Average online donation

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

Sonzee's PEMU PJ Closet at PCH

Type of Metric

Input - describing resources we use

Direction of Success

Holding steady

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
4. To be a source for families dealing with a rare genetic disorder, such as CDKL5
5. To be a source for families experiencing a grief journey following a medically complex life with CDKL5 or another rare genetic disorder

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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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.

Sonya's Story

Board of directors
as of 01/21/2024
SOURCE: Self-reported by organization
Board chair

Randi Zaila

Alyssa Zupnick

Pat Schwabinger

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? Not applicable
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? No
  • 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? Not applicable
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Not applicable
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Not applicable

Organizational demographics

SOURCE: Self-reported; last updated 1/21/2024
info Candid has made improvements to the race and ethnicity options.

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

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

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability