Taking Steps to Conquer Alport syndrome

Taking Steps to Conquer Alport syndrome

This is an exciting and busy time at ASF as many steps are being taken towards conquering Alport syndrome. While we are grateful for the lifesaving treatments of dialysis and transplantation, ASF is the only national organization dedicated entirely to finding treatments aimed specifically at Alport syndrome.  

Literally, hundreds of people across the country will be taking steps this weekend in the 1st ASF Virtual Walk. Events such as this fuel ASF and enable greater steps forward in research, education, advocacy and support There is still time to join at bit.ly/ASFVW as there is no cost to participate and no minimum donation to raise.

Steps are being made forward towards building a stronger and more united Alport syndrome community. The Alport Family Meeting held in May in Los Angeles was a great success, providing participants with a better understanding of genetics, disease management and current research while giving them the opportunity to meet other patients and families. I invite you to view this video from the event and to join us at one of the upcoming Alport Family Meetings in St. Louis or Hackensack.

Important steps are being taken in research. ASF will soon announce the recipients of this year’s research grants. To date, ASF and its partners have provided more than $1,000,000 to researchers searching for treatments for Alport syndrome.

Also announced last week, Regulus has completed the Phase 1 Study to test the safety in healthy volunteers of their anti-microRNA21 therapy (RG-012) for the treatment of Alport syndrome. RG-012 was well-tolerated with no serious adverse events reported by study participants. The Phase 2 program is targeted to begin mid-2016. Patients participating in the ATHENA Natural History Study may be offered the opportunity to roll into the Phase 2 study if they meet the eligibility criteria for this phase of the trial.

So you can see how many exciting steps forward we are taking together as a community. Thank you for your continued support of ASF. Please let me know if you have any questions.

Good luck and thank you to all of our Virtual Walkers tomorrow!

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