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This is an exciting time for research into the discovery of novel treatments and cures to fight Alport Syndrome. Several new therapies are being tested, with the first Phase II clinical trials starting soon for treatments specifically aimed at Alport Syndrome. These treatments are in large part the result of the landscape that ASF has created to encourage researchers, biotech and pharmaceutical companies to invest time and resources into Alport Syndrome research.
How does the research that ASF funds lead to treatments for Alport Syndrome?
Basic science research leads to a better understanding of the disease mechanisms in Alport Syndrome. Because of this research, we now understand how the mutated Alport gene impacts the kidney in ways that cause it to eventually fail which enables the testing of various methods to counter these effects. Biotech and pharmaceutical companies take this information to formulate targeted treatments that can be tested and potentially receive approval by the FDA through the clinical trial process to use as a new therapy.
Drug repurposing is when researchers take drugs that have already been proven safe and/or approved for treating other conditions and test them to see if they may benefit Alport patients. The use of ACE inhibitors and ARBs are examples of drugs that had been approved for other purposes, but also benefit Alport patients. The benefit of repurposing drugs is that the testing and approval process can be far shorter than with a new therapy, and will benefit patients sooner.
ASTOR is important for numerous reasons. In addition to providing a better understanding of Alport Syndrome by having information from patients across the globe in one place, it also encourages biotech and pharmaceutical companies to invest in advancing therapies to treat Alport Syndrome by providing them with information and means to communicate with patients about trials.
The ASF research program is funded by the Annual Campaign for Healthy Kidneys. The generosity of past Campaigners and donors has enabled ASF and its partners to provide more than $1 million since 2010 to Alport Syndrome rsearch.
Why is this year so important?
We are at the tipping point for Alport Syndrome research. With several potential new therapies aimed at treating Alport Syndrome in the “pipeline,” it is crucial that we increase our efforts now. ASF has set the goal of increasing our research funding to move these treatments forward and continue to encourage new therapies. To accomplish this, we have set the ambitious goal of raising $150,000 through this year’s Annual Campaign for Healthy Kidneys. But, we need your help!
If you have participated in the Annual Campaign for Healthy Kidneys before, we need you to participate again this year. If you have never participated, this is the year to join!
What do I need to do as a Campaigner?
Simply use the tools ASF provides to reach out to your contacts to request their support. ASF will supply you with a Campaigner Guide with tips and tools for successful fundraising, as well as brochures to mail, sample emails to send, a personal webpage to collect donations online and event guides should you wish to host an event to enhance your fundraising efforts.
How do I sign up to be a Campaigner?
Becoming a Campaigner is easy! Simply complete the online Campaigner registration to tell us a bit about you and your campaign plans. You can also order campaign brochures at the same time.
Then create a free online fundraising page at bit.ly/asfac16. To make your page most effective, be sure to add a personal photo and explain why you are fundraising!
How do I contribute?
Campaigners ask family and friends, employers and neighbors to support their fundraising efforts. Every Campaigner should make a donation to the campaign to show supporters they are also willing to contribute to the cause.
Donations to the campaign can be made in one or more of the following ways:
Online donations can be made to support a specific fundraiser or as a general donation to the cause.
Checks and money orders can be mailed to ASF at 1608 E. Briarwood Terrace, Phoenix, AZ 85048.
Many employers will match charitable donations made by their employees. After making your donation, ask your employer if they have a matching gift program.
Thank you for your support. Together, we will conquer Alport Syndrome!
Gina Parziale, CFRE
The Alport Syndrome Foundation improves the lives of those affected by Alport Syndrome
through education, empowerment, advocacy, and research.
Alport Syndrome Foundation • 1608 E. Briarwood Terrace • Phoenix, AZ 85048-9414
Phone Number: (480) 800-3510
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