Conquering Alport syndrome

Conquering Alport syndrome

My first six weeks as ASF’s first Executive Director have been quite exciting. During that time, I have come to greatly appreciate the importance of raising funds and awareness dedicated specifically to conquering Alport syndrome. ASF is the only national organization that focuses its efforts entirely on Alport syndrome: funding and encouraging research to expand treatment options and better understand the genetics, educating the medical community about diagnosis and treatment standards and providing services and resources focused on the specific and unique needs of Alport patients. This focus is crucial to finding treatment options to prevent kidney failure and hearing loss.

Thus, I am excited to announce the launch of two new National Campaigns to raise funds and awareness aimed specifically at conquering Alport syndrome: ASF Virtual Walk and Team ASF.

Virtual Walk
The idea of a Virtual Walk is that people will be walking across the county to conquer Alport syndrome within their own communities. There is NO COST to join and no minimum to raise. We want to make a big impact, so are asking everyone who supports ASF to register. A personal webpage will be created for you when you register and ASF will send you tips and tools to raise funds and awareness. Everyone who raises $50 by June 1 will receive a T-shirt to wear at the event. All who raise $100 will receive a T-shirt after the event.

You can walk anywhere that works for you – at a local park, on a treadmill at the gym or around your neighborhood! Make signs, wear ASF gear, carry balloons – be creative! Be sure to post a picture of your Virtual Walk on our Facebook page so everyone can see your efforts in action.

We are encouraging everyone to participate the weekend of June 18, 2016, to maximize excitement and awareness on social media. We hope to blitz Facebook with photos, videos and stories that weekend. But, if June 18 doesn’t work for you, pick a day that does! It is never too early or too late to make a difference.

In 2017, we hope to hold local walk-a-thon events for ASF. However, we want to select the locations strategically to make sure that the events are successful.  Seeing where people participate in the Virtual Walk will help us decide where events are most likely to receive support, while giving everyone across the country a chance to participate.

Team ASF
Team ASF is an ongoing campaign to allow those who participate in races or athletic events of any kind to support ASF through their efforts. As with the Virtual Walk, there is NO COST to join, so please encourage those you know who have an event coming up to participate. Everyone who raises $100 will receive a Team ASF performance shirt to wear at their event! There is also the opportunity to meet other team members through social media to share experiences.

Participants of any type of event can join. Races, Tough Mudders, dancing, bowling, head shaving – anything!

Also, as a reminder, I have created a short survey for patients and families. If you have not already done so, please take a few moments to help me better understand how ASF can best serve you.

Thank you once again for your support as we take these next steps (or bike rides, or swims…) to conquer Alport syndrome.

Gina A. Parziale, CFRE
Executive Director, Alport syndrome Foundation

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