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There are many incredible ways that you can advocate with ASF and our partner organizations in the weeks and months to come.

january 2020

No Events

february 2020

29febAll DayRare Disease Day 2020

march 2020

01marAll Day31Alport Awareness Month

april 2020

05aprAll Day5K for Healthy Kidneys

may 2020

No Events

june 2020

No Events

july 2020

No Events

august 2020

No Events

september 2020

21sep(sep 21)1:00 am23(sep 23)1:00 amGlobal Genes Summit

october 2020

No Events

november 2020

No Events

december 2020

No Events

OTHER AWARENESS EVENTS:

Other ways our members helped spread awareness:

  • 181 supporters joined the Thunderclap, reaching nearly 62,000 people with an Alport Awareness message on social media March 9th
  • Stacy in PA created a Bravelets page to sell awareness bracelets
  • Kait in NH created an Etsy page to share her Alport syndrome artwork
  • Denise in CA held a bake sale at her church to raise awareness
  • Christina sold beaded awareness bracelets
  • Travis in NJ held an event on his college campus
  • Mark in TX and his co-workers held a golf tournament to benefit ASF
  • Kevin in NY and Jessi in VA shared their stories in the ASF YouTube channel
  • Kashtan from UMN updated his 5-part series on Alport syndrome, which is was shared on Facebook and other social media
  • Tom in NY spread awareness by speaking at civic clubs
  • Jacqui in CA created a 5K team
  • Many members requested brochures to share with others.
  • Hundreds of patients and family members shared awareness information using social media.

Our Annual 5K!

For more than a decade, the Lagas Family of Phoenix, Arizona organized an annual 5K For Healthy Kidneys. They brought together patients, families, friends and neighbors to bring awareness to Alport syndrome and raise funds for Alport Syndrome Foundation. They secured sponsorships from local businesses and reached out to local running clubs. In 2020, the 5K For Healthy Kidneys, originally scheduled to take place in San Diego on April 5, 2020, was moved to an all virtual format to ensure patient safety amidst the COVID-19 pandemic.

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ALPORT ALPHABET

After her young son’s diagnosis, Kait Armstrong designed a series of prints that tell the story of living with Alport syndrome. Her Alport Alphabet starts with “A is for Alport” and includes references to things familiar to many in the Alport community: Dialysis, Hearing, Kidney, Lab Results, Sodium and Worry, to name a few. During Alport Awareness Month, Kait’s alphabet prints were displayed at the Library Art Center in Newport, NH. In addition, the alphabet series was published in Dartmouth medical school’s literary and art journal Lifelines. Kait’s creative ways of sharing her artistic talents are increasing awareness of Alport syndrome in unique ways.

BIKING FOR THE CAUSE

Robbie Yaros is an Alport syndrome patient who received a kidney transplant in 2014. Robbie completed a 100-mile virtual bicycle ride to fundraise for ASF and raise awareness of Alport syndrome while training for his participation in the Transplant Games of America. Using an online virtual platform, Robbie completed the ride in 5.5 hours, moving at an average pace of almost 19 mph, and raising $1,085.

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