The Annual Campaign for Healthy Kidneys each fall helps fund research, and gives patients and families impacted by Alport syndrome reasons to hope for the future.
Our Alport syndrome story began in 2008 when our son, Michael, was diagnosed with Alport syndrome at age 3. We had never heard of Alport syndrome and had no family history of kidney failure or hearing loss. We were shocked, scared and clueless. Google searches revealed technical medical information and worst case scenarios. We needed to be educated about Alport syndrome, to understand what to expect. We needed to talk to someone with this disease or a parent of a child with the condition – someone just like us. We needed to know about treatments and what was being done to find a cure. We needed to do SOMETHING. We found all of that when we found the Alport syndrome Foundation (ASF) and we found another thing: HOPE.
ASF shares the same mission that our family does: cure Alport syndrome. We volunteer our time, raise funds and donate to help the Foundation fulfill this mission. Each year, I gladly take on the volunteer position of Annual Campaign Chairperson because I know the money raised during each Campaign is vital to funding important Alport syndrome research.
When faced with health challenges and diagnoses, we often feel powerless – maybe even hopeless. Getting involved and contributing to ASF gave my family the capability to do something about Alport syndrome. I know the commitment of ASF to improve lives and cure this disease. I realize the dedication of ASF president, Sharon Lagas. I believe this is the place where I can help make a difference for my son and others with Alport syndrome.
Annual Campaign for Healthy Kidneys
Like many other rare diseases, funding for research on Alport syndrome is scarce. That’s why each fall the Alport syndrome Foundation conducts the Annual Campaign for Healthy Kidneys to raise much-needed funds to help in the fight against this disease. The ASF Research Program has allowed ASF and our partners to fund cutting-edge research on potential new treatments and to further the understanding of Alport syndrome. The Annual Campaign relies heavily on members of the Alport syndrome community to reach out to their personal networks and help raise funds.
Why Should You Be A Campaigner?
Members who fundraise for the Annual Campaign are called campaigners. Below are five reasons you should be a campaigner in 2015:
- Fundraising is easy! This is the easiest fundraiser you will ever participate in. Most people are very willing to donate even a small amount when they understand their donations go directly to benefiting patients. Plus ASF provides all the resources you need to be successful.
- Fundraising is empowering! Many patients and families feel helpless in facing an Alport syndrome diagnosis, but being part of the Annual Campaign helps them feel they are doing something positive and productive to help Alport syndrome families.
- Fundraising is impactful! Being part of the Annual Campaign allows you to have a direct impact on Alport syndrome research to find better treatments and a cure. ASF uses proceeds from the Annual Campaign to directly fund research on this disease.
- Fundraising increases awareness! Sharing your family’s story and talking about Alport syndrome helps increase awareness of this rare genetic kidney disease. Awareness leads to funding, which makes research possible.
- All fundraising is important! It does not matter how much you fundraise. What matters is that you get involved and work with others toward a future without Alport syndrome.
If you are interested in being a campaigner, please contact Annual Campaign Chairperson Marci Panella at [email protected].
Remember, JUST ASK!