Tag Archives: Focal Segmental Glomeruli Sclerosis
Saving Kidneys. Saving Lives.
Walk to support research for Nephrotic Syndrome and FSGS
On Sunday, October 13, 2013 at the Kiwanis Park – Fiesta Ramada’s in Tempe, AZ.
San Tan Valley, AZ. 8-2013 — The Nephcure Foundation along with local patients will be holding a NephCure Walk on Sunday, October 13, 2013. The family affected is a committed member of the community. Elizabeth (Ely) Grau, age 50, has been dealing with FSGS-Focal Segmental Glomeruli Sclerosis for over 8 years. There is no cure for this rare condition, which affects the kidney filtering systems. Ely found out that she had this disease at the same time that her favorite basketball player Miami Heat Alonso Mourning was going through his kidney transplant for the same disease. “I remember being told that if I did not attack it aggressively I would have to go on dialysis and would need a transplant within a year. It was scary to hear that, being a single mom with a 13 year old daughter at that time. Luckily the aggressive treatment put me in remission but it was at a cost. My immune system got bad, gained weight and lost a lot of my strength. I wake up everyday wondering what the day will bring. I can relapse at any given moment, with still NO CURE.”
With the cause and cure unknown and a continual increase of newly diagnosed patients, Nephrotic Syndrome and FSGS, have become a concern to patients, families, and physicians. The Nephcure Walk will allow community members to give back locally and support families like Ely’s by participating in the fight to discover the cure. Registration for the walk will begin at 9:00 am and the walk will start at 10:00 am. There is no registration fee but fundraising is encouraged. Any walker who collects over $100 will receive a free T-Shirt. All proceeds will benefit the NephCure Foundation, an organization the Grau family has been supporting actively since Ely was diagnosed with the disease.
To sign up for the walk, join Ely’s team or make a donation go to: http://www.nephcure.org/walk
Contact: Ely Grau: 480-347-8791 Email: email@example.com (committee member Arizona)
Contact: Kelly Helm Phone: 719-510-7969 Email: firstname.lastname@example.org (Colorado)