As we look forward to the New Year, we are excited about the many opportunities to increase awareness and strengthen our community.
Below are a few ways ASF will be working to help patients and families in the coming year:
Through strategic alliances with our international partners, ASF anticipates facilitating the funding of multiple research projects in 2016. These exciting funding opportunities are critical to advancing Alport syndrome research to find new treatments and a cure. Current treatments can extend natural kidney function but not indefinitely. Our hope is that new treatments can be found that can further delay kidney failure, postponing the need for dialysis and kidney transplantation. Research to better understand hearing loss in patients with Alport syndrome will also be a priority.
ASF will also keep our community up to date on the latest clinical studies and the activities of the patient registry.
In recent years ASF has joined other patient organizations in supporting legislative advocacy and will continue to do so in 2016. Telling patient stories of living with Alport syndrome and discussing the needs of individuals affected by it is a powerful way to raise awareness among policymakers. ASF will be participating in Rare Disease Week in Washington, DC, (February 29-March 3) and the National Kidney Foundation (NKF) Kidney Patient Summit (March 7-8), as well as other advocacy events later in the year.
ASF will also continue to work with international patient advocacy groups to raise the profile of Alport syndrome globally, garner more resources to facilitate research, and work for earlier diagnosis and more consistent treatment of patients, including women.
5K for Healthy Kidneys
The 9th annual Arizona 5K for Healthy Kidneys will be held on April 17 in Tempe, AZ. This is ASF’s signature event and one of our largest fundraisers of the year. The event increases awareness and raises funds for education and outreach, including patient and academic conferences. Between 250-300 people participate or fundraise each year, including patients from around the country.
Alport Family Meetings
We are very excited to announce that ASF will be hosting three regional family meetings in 2016, with the goal of empowering patients through an understanding of their disease and their connections with others. These weekend meetings will provide vital educational information, a teen and young adult program, time for socializing, and opportunities to meet medical experts. Meetings will be held in Los Angeles, CA (May), St. Louis, MO (July), and an East Coast location (September) that is still being confirmed.
The need for early diagnosis is critical for Alport syndrome patients as there are medications to prolong kidney function. The International Pediatric Nephrology Association (IPNA) has been an important partner in raising awareness of Alport syndrome in the pediatric medical community. Every three years IPNA hosts an international congress, a gathering of thousands of physicians from about 90 countries who specialize in the treatment of children with kidney disease. ASF has sponsored symposiums on Alport syndrome at the 2010 and 2013 congresses and will be sponsoring another symposium at the Congress in Brazil in September 2016.
ASN Kidney Week
ASF attends the annual Kidney Week conference hosted by the American Society of Nephrology (ASN), which brings together more than 13,000 medical specialists from around the world involved in the treatment and research of kidney disease. In 2016, Kidney Week will be held in Chicago in mid-November. This event provides an amazing opportunity to meet with experts from around the world, learn of the latest research news, and network with Alport syndrome researchers and other patient organizations. It is a highlight of our year.
ASF will have an exciting and busy 2016 — and you can be a part of that success! Fundraising is one of the most effective ways of increasing awareness across the country and using the ASF Community Fundraising page is easy. We love seeing how creative people are in developing their ideas for events! Whether through an athletic event, such as a soccer tournament or race, a dinner, a wine pull, a gathering in a family’s home or simply an online fundraising effort, patient fundraisers educate and inform people who otherwise have no association with ASF. Your personal network is a powerful resource that only you can reach. Don’t be afraid to tell your family’s story of living with Alport syndrome. Putting a face to this disease is the most effective way to generate interest in Alport syndrome.
The following community member events are confirmed for 2016:
- South Dakota 5K for Healthy Kidneys (Pierre, SD)
- Fighting Alport syndrome Pool Party (Roscoe, IL)
- Tom Denham’s Annual Charity Climb.
Alport Awareness Month
Don’t forget about Alport Awareness Month in March. Start planning now to make people in your community aware of Alport syndrome. Plan an event in March during Alport Awareness Month or any time of the year. If you have ideas for an event in your area in 2016 please let us know.
Make 2016 your year to help Alport syndrome families! Plan an event, volunteer, participate in the 5K for Healthy Kidneys, join the patient registry, attend one of the family meetings, participate in the clinical study.
Don’t miss our earlier article looking back at the achievements of 2015!