Previous Alport Awareness Activities

2016 Alport Awareness MonthAlport Awareness social media badge

As part of National Kidney Month in March, the Alport syndrome community came together for the 3rd annual Alport Awareness Month to spotlight this rare kidney disease. Individuals and families participated in a variety of ways. Below are just a few:

The McKnewsOnline Fundraising

In October 2015, David McKnew went into kidney failure and began dialysis. Around the same time, the family received news that their young daughter also has the disease. David’s wife Shannon began an online fundraising page in March to increase awareness. She says, “The Alport syndrome Foundation provided us with information and support at the time we needed it most and quickly became near and dear to our hearts.” They are raising funds to improve the future of their daughter and others like her. Donations are still being accepted on their page.

Alport AlphabetAlport Alphabet - Z is for Zebra

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 this year, Kait’s alphabet prints are on display at the Library Art Center in Newport, NH, until April 15. In addition, the alphabet series will be published in Dartmouth medical school’s literary and art journal Lifelines in the near future. Kait’s creative ways of sharing her artistic talents are increasing awareness of Alport syndrome in unique ways.

Rare Disease Summit

Andre on Witukubuli Trail André Weinstock presented at the Rare Disease Summit held by Northeastern University (NEU) in Boston, MA, in conjunction with Rare Disease Day. The event was attended by about 50 health care undergraduate and graduate students. The program included a patient with another rare disease and a representative from the National Organization for Rare Disorders (NORD).

André discussed how being dependent on hemodialysis for two years in his early 20’s inspires his current research designing catheters to potentially reduce the high rate of infections that are associated with vascular and peritoneal accesses. He also outlined challenges patients living with Alport syndrome face that other people might not, such as the necessity of being one’s own medical advocate and learning new daily coping skills. André closed by describing hiking in the cloud forests in Caribbean Dominica the month before in honor of the 20th anniversary of his kidney transplant. The response from the healthcare students was so positive that NEU is considering expanding the summit into an annual event.

Advocacy Events in DC

2016 NKF Kidney Summit - all advocates day 1ASF advocates participated in two advocacy events in Washington, DC, in the past month. ASF president Sharon Lagas attended Rare Disease Week and four other ASF advocates were in DC the following week for the 3rd annual Kidney Patient Summit hosted by the National Kidney Foundation (NKF).  

More than 100 patient advocates from five kidney organizations gathered to educate Senators and Congressmen/women about kidney disease and what legislators can do to help. Advocates met with representatives from their own and other districts to discuss topics of interest to the kidney community found in upcoming legislation. These topics included early detection and management of chronic kidney disease, the Living Donor Protection Act, and an appropriation request to increase government funding for kidney disease and related research by 10%. Four ASF advocates participated in the event along with advocates from NKF, Polycystic Kidney Disease (PKD) Foundation, American Association of Kidney Patients (AAKP), and Nephcure International.

Robbie100-Mile Virtual Bike Ride

Robbie Yaros is a nursing student with Alport syndrome who received a kidney transplant in 2014. On March 13, Robbie completed a 100-mile virtual bicycle ride to fundraise for ASF and raise awareness of Alport syndrome while training for his upcoming participation in the Transplant Games of America to be held in Ohio this June. 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. Robbie was also one of the advocates who traveled to Washington, DC, earlier this month to represent the kidney disease community.

Rare Disease Run

Alport Awareness activities are not limited just to patients. On Rare Disease Day, Agility Clinical and Regulus Therapeutics hosted an employee Rare Disease Day Run to benefit ASF. Both organizations are conducting the Alport Study currently recruiting worldwide. The event drew around 40 participants and brought in $1,300, which was matched by Agility Clinical for a grand total of $2,600 for ASF!

“It was a fun event on a beautiful morning for a great cause,” said Ellen Morgan, Agility Clinical’s CEO. “We’re glad we were able to bring awareness to Alport syndrome and ASF.”

 

Thank you to everyone who participated in raising awareness of Alport syndrome, rare diseases, and kidney disease this month

2015 Alport Awareness MonthAlport Awareness social media badge

ASF called on all members to raise awareness of Alport syndrome and chronic kidney disease during National Kidney Month in March. The Alport syndrome community responded by using social media, hosting awareness events, and fundraising.

Jewelry Party

Angie-Jace-Ms NC Lisa HedinAngie Jones hosted a jewelry party in her home that raised $750 for ASF. Sheinvited Ms. North Carolina Lisa Hedin to be a guest speaker at the party. Ms. Hedin is a dialysis nurse and spoke about the importance of kidney awareness. In addition, Angie distributed ASF brochures and raised an additional $480. Her efforts were in honor of her son Jace, who has Alport syndrome.

Several of Angie’s friends also wanted to help increase awareness of Alport syndrome and benefit ASF. Cassie from Square Crow Quilts donated 25% of March sales for her handmade quilts and Amber from My Wildflower Jewelry donated 50% of March online sales.

“I was very proud of my [jewelry] fundraiser during Alport Awareness Month! So much so that I am already planning next year’s event. It absolutely warms my heart knowing that I can do something small for a wonderful organization. Interestingly enough, just by sharing my event I was able to connect with another AS family just 10 minutes away from my home. I was able to connect her to ASF and the support group! That, to me, was my biggest success!!”

Chocolate Party

Mona - chocolate partySeveral years ago Mona Cassis wanted to fundraise for another charity so she held a chocolate party, setting out a variety of chocolately goodies and providing information on how to donate. “As the years have gone on and the party has gotten larger, we have started to put out cards with our favorite charities. Since my boys were diagnosed with Alport syndrome, we have focused more on that.”

About 70 people attended Mona’s event this March, eating chocolate and learning more about Alport syndrome. Some people also made donations to ASF. What a fun way to raise awareness!

 Online Fundraising

Tia Pirollo created an online fundraising page to bring awareness to friends and family with hopes to eventually expand into the community. Helping to fund research is very important to her family because her son was diagnosed at the age of 2 with Alport syndrome and they hope the money they raise will assist in future treatments. Her efforts raised $1,475.

Tia said, “I have never done any type of fundraising before so in the beginning I felt a little intimated by the idea. The web site made it so easy to setup and track money raised. The ASF staff was so very helpful and always on hand when I had any questions.  My plans are to create a page annually because I had such a great experience.”

Other Awareness Events

Below are a few 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 9
  • Stacy in PA created a Bravelets page to sell awareness bracelets
  • Kait in NH created an Etsy page to share her Alport syndrome artwork
  • Jennifer in SD hosted a 5K for Healthy Kidneys in her community
  • 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
  • Nathan in CA did fundraising for the Arizona 5K for Healthy Kidneys
  • 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
  • Dr. Kashtan from UMN updated his 5-part series on Alport syndrome, which is being shared weekly on Facebook and other social media
  • Tom in NY spread awareness by speaking at civic clubs
  • Jacqui in CA created a team for the Arizona 5K
  • Many members requested brochures to share with others.\
  • Dozens of members shared awareness information using social media.

2014 Alport Awareness Month

The first ever Alport Awareness Month was held in March 2014 during National Kidney Month. The month was dedicated to increasing awareness of Alport syndrome, kidney disease, and the need for organ donors.

Check out the amazing things that happened in this one month!

Kidney Patient Advocacy Summit

To kick off National Kidney Month, ASF members Mike Panella, Cindy Onder, and Sharon Lagas participated in the first Kidney Patient Summit in Washington, DC, on March 3-4. Along with patients from five other national kidney organizations, patients visited with legislators and shared their stories of living with kidney disease.

The summit was aimed at increasing  awareness of the risks of kidney disease and advocating a more proactive approach to prevention, early detection, and efforts to delay or manage disease progression, as well as the need for increased research funding. Six patient organizations participated in the summit which was organized by the National Kidney Foundation.

Arizona 5K for Healthy Kidneys

Over 350 people participated in the annual 5K for Healthy Kidneys in Arizona on March 30. The event raised over $50,000.

Check out more photos of the 2014 Arizona 5K.

Awareness Events

ASF asked the Alport syndrome community to simply “do something“ to raise awareness during March 2014 and the response was phenomenal!

  • Erin and Geoff ran in the LA Marathon in honor of Erin‘s brother, Paul
  • John in FL held a dinner party with friends
  • Tom in NY increased awareness by  speaking at civic clubs
  • Young Kenzie in OH made cupcakes and spoke to her 3rd grade class
  • Michelle in AZ recruited a team  for the Arizona 5K
  • Amber in IL donated a portion of all her nature-themed jewelry, as well as her ASF jewelry
  • Amanda in FL held a Blue Day at school
  • Stan and Linda in AZ created a fundraising page  for the Arizona 5K
  • Angie in NC hosted an online Origami Owl jewelry party and held a drag race in honor of Alport syndrome
  • Dr. Kashtan from UMN wrote a 5-part series on AS which was posted on the ASF Facebook page throughout the month
  • Young Noah in MD made a donation from his piggy bank in honor of his father
  • Cassie in IL hosted a raffle of prizes  donated by online vendors
  • Jacqui in CA created a team  for  the Arizona 5K
  • Jaylene in FL raised awareness at work
  • Liz in AZ created two videos for the ASF YouTube channel
  • Marsha in MA created an online fundraising page
  • Faith in PA shared brochures at the  office where she works
  • Sami in MA posted  a video about her family’s AS journey
  • Stephanie in OH sold candy
  • Becky in NC donated a portion of jewelry sales
  • Ellen in CA created an online fundraising page for the Arizona 5K in honor of her brother
  • Carrie in SC did offline fundraising among family and friends, and placed buckets at local businesses to collect donations
  • Ryan and Sharon in CA shared patient perspectives with Regulus Therapeutics researchers
  • Dozens of members used ASF brochures to share information about Alport syndrome and ASF
  • Families submitted their stories for  the ASF website
  • Select  Arizona Walgreens stores collected donations  from their customers  all month
  • Many members used their  social media to raise awareness.
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