Overview
What is Kcnq2 Cure Alliance?
Kcnq2 Cure Alliance is a nonprofit organization based in Denver, Colorado, with a focus on funding research for KCNQ2 epileptic encephalopathy, a rare and severe form of epilepsy. They accomplish this by providing research grants, employing a unique approach to encourage advancements in treatment and potentially finding a cure. Recently, they collaborated with Boston Children's Hospital to expand an international patient registry and draft a natural history study involving countries such as Bulgaria, China, Australia, Canada, Norway, Spain, Croatia, the United Kingdom, and the United States. This joint effort aims to contribute to the creation of human cell lines, CRISPR work, and additional input for translation therapies like RNA and gene therapy approaches.
Official website here: www.kcnq2cure.org
What are the reviews and ratings of this charity?
Charity Navigator Rating: 76%, Three-Star out of Four Star rating.
KCNQ2 Cure Alliance has received a commendable rating of 76%, reflecting strong accountability and financial health. The organization boasts an independent board with 100% of its members being independent, which is crucial for maintaining objectivity and transparency in its operations. It also shows impressive financial efficiency, with 96.54% of its expenses directed towards programs, indicating a commitment to its mission.
User feedback highlights the transformative impact of the KCNQ2 Cure Alliance on families affected by KCNQ2. Many testimonials emphasize the vital support network the organization provides, helping families connect with each other and access essential information regarding treatment and research. Users appreciate the community fostered through summits and online forums, which have proven invaluable during challenging times.
While the feedback is overwhelmingly positive, no significant limitations are noted in the data. The organization seems to be effectively addressing the needs of families dealing with this rare disease, ensuring they feel understood and supported in their journeys. Overall, the KCNQ2 Cure Alliance is recognized as a dedicated entity making a positive difference in the lives of those impacted by KCNQ2.
This AI summary has been generated from information found on Charity Navigator and Great Nonprofits.
What do the Facebook reviews say about Kcnq2 Cure Alliance?
100% of reviewers on Facebook recommend Kcnq2 Cure Alliance. Here is a summary of their reviews:
The organization has garnered strong support from families touched by Ohtahara syndrome, with one recent reviewer expressing a heartfelt request for information and community support during difficult times. This highlights the sense of solidarity and hope fostered by the nonprofit, as they provide a platform for families seeking guidance and connection.
Overall, the sentiment is overwhelmingly positive, with participants appreciating the caring environment that Kcnq2 Cure Alliance creates. Families are encouraged and feel a deep sense of trust in the mission of the nonprofit, believing in collective efforts to find solutions and miracles for affected children and their families.
This AI summary has been generated from reviews found on Facebook.
Is Kcnq2 Cure Alliance legitimate?
Kcnq2 Cure Alliance is a legitimate nonprofit organization registered as a 501(c)(3) entity. Kcnq2 Cure Alliance 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.kcnq2cure.org
What is the mission statement of Kcnq2 Cure Alliance?
The Kcnq2 Cure Alliance is a non-profit organization committed to advancing research for KCNQ2 epileptic encephalopathy, a rare and severe form of epilepsy. Their mission is to provide research grants with a novel approach, encouraging progress among researchers and the medical community. This aim is to discover improved treatments and ultimately, a cure, while also offering assistance to those affected and their families. The organization serves as a resource, supporting individuals living with this condition and contributing to the broader epilepsy community.
Official website here: www.kcnq2cure.org
Who is the CEO of Kcnq2 Cure Alliance?
Jim Johnson is the President of Kcnq2 Cure Alliance.
Official website here: www.kcnq2cure.org
What is the revenue of Kcnq2 Cure Alliance?
Kcnq2 Cure Alliance's revenue in 2022 was $172,403.
Official website here: www.kcnq2cure.org
Who are the executives of Kcnq2 Cure Alliance and what are their salaries?
Here are 4 key members and their salaries:
- Compensation: $0
- Related: $0
- Other: $0
- Compensation: $0
- Related: $0
- Other: $0
- Compensation: $0
- Related: $0
- Other: $0
- Compensation: $0
- Related: $0
- Other: $0
Official website here: www.kcnq2cure.org
Where can I find the form 990 for Kcnq2 Cure Alliance?
Kcnq2 Cure Alliance's most recent form 990 was submitted in 2022 and can be accessed here.
Official website here: www.kcnq2cure.org
Learn more at the official website: www.kcnq2cure.org
Mission Statement of Kcnq2 Cure Alliance
Kcnq2 Cure Alliance is a non-profit organization committed to making significant strides in the research and treatment of KCNQ2 Epileptic Encephalopathy, a rare and devastating form of epilepsy. Their mission is twofold: firstly, they aim to raise research funds and secondly, they offer grants for innovative KCNQ2 research. By investing in novel approaches, Kcnq2 Cure Alliance seeks to propel researchers and the medical community forward, ultimately leading to the discovery of improved treatments and, ideally, a cure. Simultaneously, they provide support to individuals and their families who are affected by this condition.
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Impact
October, 2024
Kcnq2 Cure Alliance significantly advances research for KCNQ2 epileptic encephalopathy, a rare and severe form of epilepsy. By providing targeted research grants, it accelerates the development of innovative treatments and potential cures. The collaboration with Boston Children's Hospital to establish an updated KCNQ2 registry has global implications, involving over 100 patients from various countries, including Bulgaria, China, Australia, Canada, Norway, Spain, Croatia, the United Kingdom, and the United States.
This registry not only catalogs important patient data but also contributes to essential research efforts, such as generating human cell lines and CRISPR technologies. The detailed studies and statistical impact reports produced from this data play a pivotal role in informing translational therapies like RNA and gene therapy approaches. Overall, Kcnq2 Cure Alliance is fostering a collaborative environment that propels the medical community toward groundbreaking options for affected individuals and their families.
This information is meant to be a general summary of Kcnq2 Cure Alliance. 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.
Other financial information:
This information is from the most recently submitted tax form from this organization, which was in 2022.
- Program Service Revenue: $56,500
- Gross Receipts: $172,403
Assets and Liabilities:
- Total Assets: $730,127
- Total Liabilities: $0
- Net Assets: $730,127
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Programs
Programs are reported by nonprofits in their tax forms and are normally their tax-exempt activities.
SUMMIT REGISTRATION
Revenue
$56,500
Organization Details
Founding Year
2015
Phone
(303) 887-9532Principal Officer
Jim Johnson
Main Address
3700 NORTHFIELD QUEBEC ST UNIT 100, DENVER, CO, 80207
Website
www.kcnq2cure.orgNTEE Category
Code: G30 - Disease
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