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Cystinosis Research Network Inc

Learn about this cause: Is it Legit? Do I like the mission? What is the CEO's salary?

EIN: 043323789 ✦ Lake forest, IL ✦ Designated as a 501(c)(3)

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Overview

What is Cystinosis Research Network Inc?

Cystinosis Research Network Inc is a dedicated, volunteer-led, non-profit organization situated in Lake Forest, Illinois. With a focus on advocacy and research, the organization supports individuals and families affected by cystinosis. They provide funding for fellowships and research grants, aiming to advance clinical and research training in this specific condition. Moreover, the Cystinosis Research Network serves as a valuable resource for public and medical communities, spreading awareness about the disease. Their mission is multifaceted, encompassing family assistance, educational outreach, and advocacy efforts to bolster the understanding and treatment of cystinosis.


Official website here: www.cystinosis.org

Is Cystinosis Research Network Inc legitimate?

Cystinosis Research Network Inc is a legitimate nonprofit organization registered as a 501(c)(3) entity. Cystinosis Research Network Inc submitted a form 990, which is a tax form used by tax-exempt organizations in the U.S., indicating its operational transparency and adherence to regulatory requirements. Donations to this organization are tax deductible.


Heare are some key statistics you may want to consider:

Executive Compensation: $0
Professional Fundraising Fees: $0
Other Salaries and Wages: $0

For more financial information, click here


Official website here: www.cystinosis.org

What is the mission statement of Cystinosis Research Network Inc?

The Cystinosis Research Network is a volunteer-driven, non-profit organization committed to advocating for research, providing family assistance, and educating both the public and medical communities about cystinosis. Their mission is to establish and fund fellowships and research grants focusing on clinical and research training in cystinosis, aiming to advance our understanding and treatments for this condition. They also offer support to families affected by cystinosis and work towards increasing public awareness of this rare genetic disorder.


Official website here: www.cystinosis.org

Who is the CEO of Cystinosis Research Network Inc?

Clair Johnstone is the Exec Dir & Vp Research of Cystinosis Research Network Inc.


Official website here: www.cystinosis.org

What is the revenue of Cystinosis Research Network Inc?

Cystinosis Research Network Inc's revenue in 2022 was $346,267.


Official website here: www.cystinosis.org

Who are the executives of Cystinosis Research Network Inc and what are their salaries?

There 20 volunteers at Cystinosis Research Network Inc.


Here are 14 key members and their salaries:


Christy Greeley (Exec Dir & Vp Research)
  • Compensation: $0
  • Related: $0
  • Other: $0
Johnathan Dicks (President, Vp Development)
  • Compensation: $0
  • Related: $0
  • Other: $0
Tim Wyman (Treasurer)
  • Compensation: $0
  • Related: $0
  • Other: $0
Karen Gledhill (Secretary)
  • Compensation: $0
  • Related: $0
  • Other: $0
Marybeth Krummenacker (Vp Education & Awareness)
  • Compensation: $0
  • Related: $0
  • Other: $0
Kristina Sevel (Vp Research)
  • Compensation: $0
  • Related: $0
  • Other: $0
Carol Hughes (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Gail Potts (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Heather Fields Rothrock (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Terri Schleuder (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Herberth Sigler (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Jen Wyman (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Chelsea Meschke (Vp Family Support (Until 10/22))
  • Compensation: $0
  • Related: $0
  • Other: $0
Megan Morrill (Director (Until 10/22))
  • Compensation: $0
  • Related: $0
  • Other: $0


Official website here: www.cystinosis.org

Where can I find the form 990 for Cystinosis Research Network Inc?

Cystinosis Research Network Inc's most recent form 990 was submitted in 2022 and can be accessed here.


Official website here: www.cystinosis.org

Learn more at the official website: www.cystinosis.org

Mission Statement of Cystinosis Research Network Inc

The Cystinosis Research Network, an all-volunteer, non-profit organization, is dedicated to supporting and advocating for research related to cystinosis. This mission extends beyond just research, as the network also provides family assistance and works to educate both the general public and medical communities about this rare genetic disorder. By establishing and funding fellowships and research grants focusing on clinical and research training in cystinosis, the organization aims to make significant strides in understanding and treating this condition. The Cystinosis Research Network's efforts are instrumental in advancing knowledge and support for individuals and families affected by this genetic disorder, serving as a vital resource in the cystinosis community.

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Impact




October, 2024

Cystinosis Research Network Inc significantly impacts the scientific and medical communities as well as families affected by cystinosis. Through dedicated advocacy and support for research, it facilitates advancements in understanding and treating this rare genetic disorder. By establishing and funding fellowships and research grants, the organization enhances clinical and research training in cystinosis, encouraging the development of innovative therapies and improving patient outcomes.

Moreover, it plays a crucial role in family assistance, offering resources and support to those directly affected by the disease. The network also prioritizes public and medical education, increasing awareness about cystinosis among healthcare professionals and the general public. This commitment to education helps ensure that families receive accurate information and better care, ultimately fostering a more informed community regarding the challenges associated with cystinosis. Through these multifaceted initiatives, Cystinosis Research Network Inc is making a lasting difference in the fight against cystinosis.




This information is meant to be a general summary of Cystinosis Research Network Inc. Please take the time to review official sources before making any decisions based upon the content provided here.


Financials

This financial information is from Propublica.

Revenue
$346,267 (2022)
Expenses
$537,436 (2022)
Efficiency

Other financial information:

This information is from the most recently submitted tax form from this organization, which was in 2022.

  • Investment Income: $394
  • Gross Receipts: $346,267

Assets and Liabilities:

  • Total Assets: $505,368
  • Total Liabilities: $53,677
  • Net Assets: $451,691

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Organization Details

Founding Year

1996

Principal Officer

Clair Johnstone

Main Address

PO BOX 702, LAKE FOREST, IL, 60045

NTEE Category

Code: B99 - Education

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