Overview
What is Alport Syndrome Foundation Inc?
The Alport Syndrome Foundation Inc, located in Scottsdale, Arizona, is a dedicated nonprofit organization focusing on improving the lives of individuals affected by Alport Syndrome. Their mission encompasses education, empowerment, advocacy, and funding research to ultimately make Alport Syndrome a treatable disease and find a cure. To accomplish this, they offer various resources, such as facilitating virtual meetings for patients, developing a family planning guide, expanding their website with mental health resources and parent/caregiver tips, and implementing a follow-up system for new members. Additionally, the Foundation offers numerous volunteer opportunities and advocates at both the state and federal levels. With a team of two dedicated individuals, the Alport Syndrome Foundation Inc is committed to supporting and empowering those affected by this genetic kidney disease.
Official website here: www.alportsyndrome.org
What are the reviews and ratings of this charity?
96% rating from Charity Navigator, indicating a Four-Star out of Four Star rating based on strong accountability and financial health. The foundation has achieved a perfect score in multiple areas, including independent board membership and the absence of asset diversion, signaling robust governance and transparency.
User feedback highlights the organization's effectiveness in providing valuable resources and support to families affected by Alport Syndrome. One review specifically commends the foundation for its informational support and for offering financial assistance through a grant, illustrating the direct impact it has on individuals' lives.
While the ratings and reviews are overwhelmingly positive, they primarily focus on financial accountability and specific user experiences. There are no noted limitations in the data provided, suggesting overall satisfaction with the organization's operations and services.
This AI summary has been generated from information found on Charity Navigator and Great Nonprofits.
Is Alport Syndrome Foundation Inc legitimate?
Alport Syndrome Foundation Inc is a legitimate nonprofit organization registered as a 501(c)(3) entity. Alport Syndrome Foundation 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: $134,582
For more financial information, click here
Official website here: www.alportsyndrome.org
What is the mission statement of Alport Syndrome Foundation Inc?
The Alport Syndrome Foundation Inc's mission is centered around improving the lives of individuals affected by Alport Syndrome. They aim to achieve this through various means, including education, empowerment, advocacy, and funding research. The foundation's ultimate goal is to make Alport Syndrome a treatable disease and find a cure. They provide support and resources to patients and their families, with a focus on funding research to develop more effective treatment protocols. The foundation also offers educational programming and patient community engagement opportunities, such as virtual meetings and volunteer opportunities, to address the unique needs of patients and their families. They have expanded their online resources to include mental health resources, parent/caregiver tips, and more, and implemented a follow-up system for new members to ensure their questions are answered.
Official website here: www.alportsyndrome.org
Who is the CEO of Alport Syndrome Foundation Inc?
Andrew Kronenberg is the Chair of Alport Syndrome Foundation Inc.
Official website here: www.alportsyndrome.org
What is the revenue of Alport Syndrome Foundation Inc?
Alport Syndrome Foundation Inc's revenue in 2022 was $990,673.
Official website here: www.alportsyndrome.org
Who are the executives of Alport Syndrome Foundation Inc and what are their salaries?
The average compensation at Alport Syndrome Foundation Inc during 2022 was $67,291. There are 2 employees and 249 volunteers at Alport Syndrome Foundation Inc.
Here are 9 key members and their salaries:
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Official website here: www.alportsyndrome.org
Where can I find the form 990 for Alport Syndrome Foundation Inc?
Alport Syndrome Foundation Inc's most recent form 990 was submitted in 2022 and can be accessed here.
Official website here: www.alportsyndrome.org
Learn more at the official website: www.alportsyndrome.org
Mission Statement of Alport Syndrome Foundation Inc
The Alport Syndrome Foundation Inc is committed to improving the lives of individuals affected by Alport Syndrome. Through education, empowerment, advocacy, and funding research, the foundation aims to make Alport Syndrome a treatable disease and ultimately find a cure. Established with the goal of supporting patients and their families who have been affected by this genetic kidney disease, the foundation's mission is to provide resources and opportunities for those living with Alport Syndrome.
The Alport Syndrome Foundation Inc has taken various initiatives to achieve its mission. It has strengthened and expanded patient resources, facilitating virtual meetings to connect patients with one another. The foundation has also developed a downloadable family planning guide as a resource for patients, led by its Emerging Leadership Council. Additionally, the foundation has expanded its website with numerous new pages, including mental health resources, parent/caregiver tips, and podcast appearances. Furthermore, the foundation has implemented a 3-month follow-up system for new membership registrants and restructured patient volunteer opportunities.
In summary, the Alport Syndrome Foundation Inc is dedicated to improving the lives of individuals affected by Alport Syndrome. Through education, empowerment, advocacy, and funding research, the foundation aims to make Alport Syndrome a treatable disease and ultimately find a cure. The foundation provides resources and opportunities for patients and their families, including virtual meetings, a family planning guide, expanded website resources, a follow-up system for new members, and restructured volunteer opportunities.
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Impact
October, 2024
Alport Syndrome Foundation Inc has made significant strides in improving the lives of those affected by Alport Syndrome through various initiatives focused on education, empowerment, advocacy, and research funding. By strengthening and expanding patient resources, the foundation has facilitated 15 direct connect virtual meetings that create meaningful connections among patients, addressing topics of importance to their community.
A key accomplishment is the completion of a downloadable family planning guide, designed specifically for patients living with this rare genetic kidney disease. Additionally, the foundation has expanded its website to include vital mental health resources, parent and caregiver tips, and content like podcast appearances to further support its community.
To enhance patient engagement, the foundation has implemented a follow-up system that ensures new members have their questions answered and feel supported. Moreover, there have been efforts to restructure volunteer opportunities, allowing members to participate actively in research initiatives overseen by the foundation's Scientific Advisory Research Network.
The overarching goal is to turn Alport Syndrome into a treatable condition while working diligently towards finding a cure, thereby greatly benefiting those impacted by this disease.
This information is meant to be a general summary of Alport Syndrome Foundation 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.
Other financial information:
This information is from the most recently submitted tax form from this organization, which was in 2022.
- Investment Income: $170
- Gross Receipts: $990,673
Assets and Liabilities:
- Total Assets: $2,277,966
- Total Liabilities: $42,491
- Net Assets: $2,235,475
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Organization Details
Founding Year
2007
Phone
(480) 800-3510Principal Officer
Andrew Kronenberg
Main Address
PO BOX 4130, SCOTTSDALE, AZ, 852614130
Website
www.alportsyndrome.orgNTEE Category
Code: E86 - Health
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