IPNA's mission is to improve the care of children with diseases of the kidney and urinary tract, and promote knowledge among the medical community. It is estimated between 150,000 and 300,000 pediatric patients worldwide have end-stage renal disease (ESRD) yet only about 10-20% of them receive renal replacement therapy (RRT) through dialysis or transplantation, partly due to a shortage of pediatric nephrologists.
The event began with a pre-conference symposium spotlighting several rare diseases, including Alport Syndrome. Dr. Clifford Kashtan, Dr. Michelle Rheault, and Prof. Jie Ding presented information on genetics and diagnositcs, developing novel treatment targets in research, and outlining recommended treatment of kidneys, ears and eyes for children with Alport Syndrome. ASF supported the symposium to promote earlier treatment and consistent diagnosis, especially in girls. Board President Sharon Lagas also distributed handouts in English, Spanish and Portuguese at the ASF booth. The event was a great opportunity to talk to doctors from around the world who treat patients with Alport Syndrome and connect with researchers in South America.
Paul Silver Tribute Award
Applications due November 4
Applications for the 2016 Paul Silver Tribute Award are due November 4, 2016. Young people ages 16 to 22 are encouraged to begin the application process early as the application includes an essay from the applicant and letters from the applicant's school and physician.
This annual award grants up to a maximum of $1,000 to selected individuals to support an activity that will enhance the applicant‘s life.
Alport Syndrome Research
Patient Research Survey
ASF and its partners have funded Alport Syndrome research each year for the past six years. ASF is now taking steps to better define what specifically we want that research to accomplish, such as what clinical and quality of life objectives would be the most impactful to patients. Please take a moment to complete a short survey to provide your insight from a patient perspective.
HERA Phase II Study
The HERA Study is a Phase II proof-of-concept study evaluating the safety and effectiveness of a new investigational agent, RG-012, compared to placebo in patients with Alport Syndrome.
Patient screening has begun at select locations and dosing is expected to commence within the near term. Additional locations will be activated soon. The study will be conducted at multiple sites in the United States, Canada, European Union and Australia.
If you are currently participating in the ATHENA study, please contact your study coordinator to discuss eligibility for the HERA study. To find the site closest to you, go to the study website.
ATHENA Alport Study
Participants are still being recruited for the worldwide ATHENA study to better understand the changes in kidneys of people with Alport Syndrome. This study is an observational study only.
For a rare disease such as Alport Syndrome, a patient registry plays an essential role in contacting eligible individuals for new and ongoing clinical studies and trials. If you are an Alport Syndrome patient, family member or treating physician, please consider joining the patient registry.
Don’t miss a fun night of music by the Ten Feet Tall band, who will perform on Saturday, October 29, at Villain and Saint in Bethesda, MD. The band is donating a portion of the proceeds to ASF in honor of their young friend, McKenna. There will also be a Halloween costume contest and other fun opportunities to support people like McKenna who have Alport Syndrome.
Generosity NYC is a multi-charity 5K Run/Walk that will take place on November 13 in New York City's Riverside Park. As a run/walk event, racers from all ability levels and ages can participate, including kids! Registration is only $20, but all participants must commit to fundraising a minimum of $200. ASF will provide tips and tools to help you raise funds online and off. Participants will receive both a Generosity Series T-shirt and a Team ASF race shirt.
Battle It Lacrosse
Mack Bonebrake is a high school lacrosse player whose younger brother, Grant, was diagnosed with Alport Syndrome in 2014. Mack and Grant wanted to do something to help advance research so they created the Battle It Lacrosse team, an opportunity for their friends to play high-level lacrosse while raising awareness and funds for Alport Syndrome research. They will be participating in the Palm Desert Lax Classic in November. Donations are being accepted toward Mack's fundraising goal is $5,500 and all donations will go to the Annual Campaign.
Armstrong Family Reunion
When the Armstrong Family from Minnesota had their reunion in August, one of the activities they included was a silent auction for charity. Family members were invited to bring a homemade item or family heirloom to auction and the money raised would go to the charity of their choice. The family raised more than $250 for ASF. Thank you to everyone in the Armstrong family!
Tributes made July - September 2016
In Honor Of:
The Atkiss Family, James and Tara Casey, Rachel Denham, Tom Denham, Jason Marcotte, Jake and Grant Parsons, Celina LaBrec-Salmons.
In Memory Of:
Eileen T. Greenfield
Annual Campaign tributes will be listed on the ASF website at the end of the campaign.
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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To update your email or other contact information, request additional information about an item in the newsletter, or submit other questions, please contact us at ASFNews@alportsyndrome.org.
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