Past Events

Forbidden Peak Charity Climb

Tom Denham finished his 5th annual charity climb in honor of his daughter Rachel by completing a challenging 15-hour climb to reach the summit of Forbidden Peak in the Northern Cascades. Tom has raised over $25,000 for ASF and is halfway toward his goal to climb ten major mountains to benefit ASF. You can still make a donation toward Tom’s 2016 climb on his fundraising page.

Escape from Alcatraz Triathlon

Jeff Litt competed in the Escape from Alcatraz Triathlon in San Francisco on June 12. Participants were dropped off in San Francisco Bay just off the shores of Alcatraz. They then swam back through strong currents and Great White Sharks to reach shore, before completing an uphill bike ride and a run. Jeff raised nearly $1,000 for Alport syndrome as part of this 27.5-mile race.

2016 Transplant Games

Robbie Yaros participated in the Transplant Games of America on June 10-15 in honor of his kidney donor. Robbie competed in Swimming, Cycling and Track events in the men’s 18-29 division, winning gold in the 500m Freestyle, the 20K road race, the 5K time trial and the men’s virtual triathlon (500 freestyle, 20K road race and 1500m track event combined for time). He also won a bronze medal as a member of Team Florida’s Mixed 4×100 relay, which had two living kidney donors and two transplant recipients on the team.

Fat Ass 5K & Street Party for Charity

The annual Fat Ass 5K, held in Springfield, IL, on May 7, has donated $12,500 to ASF! The Fat Ass 5K & Street Party for Charity has donated $94,000 to ASF since 2010.  Thank you to everyone involved with this event for your continued support.

South Dakota 5K for Healthy Kidneys

The 2nd annual South Dakota 5K for Healthy Kidneys was held on May 7. The event is hosted by the Rancour family of Pierre. Over $3,000 was raised for outreach and education to support patients and families affected by Alport syndrome.

Arizona 5K for Healthy Kidneys

The 9th annual Arizona 5K for Healthy Kidneys was held on April 17 in Tempe, AZ. Approximately 300 people turned out on to participate in the annual run/walk event and enjoy the beautiful spring weather, raising over $49,000 for education, awareness and outreach.

100-Mile Virtual Bike Ride

Robbie Yaros is an Alport syndrome patient and nursing student 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.

Rare Disease Run

Alport Awareness activities are not limited just to patients. On February 29 for 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!

2015 Ironman Triathlon

Jeff Litt completed his first Ironman Triathlon in November. He swam, bicycled, and ran a total of 140.6 miles in 13 hours, 31 minutes. Jeff ran with pictures of his wife Rachelle, and their children Amanda, Brandon and Austin, who all have Alport syndrome. He said, “When I check off all the things that I accomplished that day, I’m overwhelmed with emotion. The physical, personal and most important the charitable goals I achieved make me a better person and keep me grounded in knowing what is truly important in this world. I want to thank the Foundation for all your support and encouragement throughout my journey.” Jeff raised almost $5,000 for the Annual Campaign.

Benefit Concert

Joy and Adam Toal put their talents to good use by holding a benefit concert with wine, cheese and homemade desserts to raise funds while having fun. The evening was highlighted by Adam’s piano concert, which featured the works of many famous classical composers and included one of his own compositions. The guests went home happy and the Toals raised $1,750 for the Annual Campaign.

10th Anniversary Networking Breakfast

More than 50 people attended the networking breakfast Tom Denham hosted to celebrate the 10th anniversary of his business. Tom had ASF brochures available to raise awareness and raised nearly $400 to help find a cure for Alport syndrome, which impacts his daughter.

Tom also completes an annual charity climb so his friend Gabby made him an amazing rock-climbing cake.

Stella and Dot Jewelry Fundraiser

Rachelle Litt hosted a fundraiser for ASF that included refreshments and a chance to shop for beautiful jewelry and accessories through the Stella & Dot line. Guests had a fun time and got some great deals. Those who couldn’t attend were able to order online. This is the second year Rachelle has hosted this fundraiser to support the Annual Campaign.

Arizona Coyotes Foundation

The Arizona Coyotes Foundation holds a 50/50 raffle at all home games. They invite volunteers from various non-profits to sell raffle tickets and the Coyotes donate a portion of the raffle sales to the charity.

This fall, ASF volunteers helped raise nearly $3,800 for the Annual Campaign.

Youth Soccer Tournament

Tere Martinez-Alvarez and her teen sons organized a tournament for young soccer players in Dorado, Puerto Rico. More than 150 youth in four age categories participated in the all-day event, with each team playing three games. Tere and her sons have Alport syndrome and used the event to increase awareness and raised over $10,000 to benefit ASF and the campaign.

Wine Pull

Jennifer Sanner, Tia’s sister, hosted a wine pull in Houston. She gathered a variety of wines and numbered them. Participants selected a cork with a hidden number and received the bottle with the matching number. A friend also created some gorgeous wine bottle art that was included with select bottles as a bonus. The event raised over $1,500.

Party With A Purpose

Tia Pirollo’s young son was diagnosed with Alport syndrome several years ago. She and her sister wanted to help fund research and raise awareness in their respective areas. In, Ohio, Tia hosted a Party With A Purpose — a girl’s night out that included food, beverages and a raffle for a .5 carat diamond ring. The event raised $1,280 for the Annual Campaign.

Annual Campaign Bake Sale

Twelve-year-old Jared has multiple family members affected by Alport syndrome. He wanted to help find a cure so he held a bake sale and donated the $200 in proceeds to the Annual Campaign for Healthy Kidneys.

Nations Triathlon

Dr. Jeffrey Litt competed in the Nations Triathlon on September 13. The course wound through Washington, DC’s monument corridor and included a 1500 meter swim in the Potomac River, 40K bike course through DC, and a 10K run through the Capitol’s historical landmarks with a spectacular finish!

Jeff is also competing in the Florida Ironman 140.6 in November. His is fundraising for both races in honor of his three children who have Alport syndrome. You can still make a donation on his online fundraising page.

Mt. Shuksan Charity Climb

Tom Denham climbed Mt. Shuksan in the Northern Cascades and raised close to $6,000. He has pledged to raise $50,000 over a ten-year period by participating in an annual charity climb. This is Tom’s fourth charity climb for ASF and he has raised over $20,000 by climbing first to Devil’s Tower in 2012, followed by Half Dome in Yosemite National Park in 2013, and alpine climbs on Mt. Baker in 2014 and Mt. Shuksan in 2015.

Tom’s charity climbs are in honor of his teenage daughter Rachel who has Alport syndrome. You can still donate to his 2015 climb on his fundraising page.

Music for McKenna

Cindy and Nick Onder and their friend Larry Joseloff from the band Ten Feet Tall hosted Music for McKenna in Bethesda, MD. The event was in honor of the Onder’s daughter McKenna, who has Alport syndrome. The band graciously donated half the ticket sales and the Onders collected additional donations that night. When combined with family donations, more than $3,200 was donated to ASF!

Cindy Onder said of her first fundraising event, “We are so grateful for the outpouring of support from those who attended and from those who could not make the event, but chose to send in a donation.” Thank you to everyone who made this event such a success!

Fat Ass 5K & Street Party for Charity

The annual Fat Ass 5K & Street Party for Charity, held in Springfield, IL, on May 9, donated $15,000 to ASF! The Fat Ass 5K & Street Party for Charity has donated $81,500 to ASF since 2010.  Thank you to the organizers and participants who continue to support ASF each year.

Jim Deatherage Memorial

When James “Jim” Deatherage passed away, his family invited family and friends to make donations to ASF in Jim’s memory. They chose to support ASF because Jim’s grandson, Gavin Leach, has Alport syndrome. They raised $500.

Thank you to the Deatherage family and their many friends and family for honoring Jim in this significant way and supporting the fight against Alport syndrome.

Arizona 5K for Healthy Kidneys

Approximately 300 people turned out to participate in the 8th annual run/walk event and enjoy the beautiful spring weather, raising nearly $42,000 for education, awareness and outreach. Thank you to all who helped make the 2015 event so successful!

Go to the 5K for Healthy Kidneys webpage to learn more about this annual event.

South Dakota 5K for Healthy Kidneys

More than 100 participants and volunteers joined the first-ever South Dakota 5K for Healthy Kidneys in Pierre. Because of the tremendous support from the community, nearly $5,000 was raised for outreach and patient education.

Jennifer Rancour hosted the South Dakota 5K. “I feel blessed to have been able to organize this event. I am very thankful to ASF for providing support and education to families like mine and funding research. Your organization has basically been my only go-to for information, other than Dr. Kashtan, for many years.” Thank you to Jennifer and everyone who helped make this event a success!

Robert Barry Sause Memorial

In 2008 John Patrick Mendez was diagnosed with Alport syndrome. Since that time, Robert Barry Sause, his grandfather, was very involved in his care and advocacy with ASF. As a retired pharmacist, Barry would regularly attend appointments with his grandson’s nephrologist. He also attended the family conference in NYC and the patient meeting in Atlanta. When “Papa” lost his battle to cancer, his family invited family and friends to make donations in Barry’s memory to ASF, the charity that he held dearest to his heart. This loving gesture has raised more than $2,400 to fight Alport syndrome.

Josephine Pellegrino Memorial

Josephine (Jo) Pellegrino was a devoted mother, grandmother, and great grandmother, who passed away at the age of 89. She raised her children to be independent thinkers and good stewards of Christ. Four of Jo’s grandchildren are afflicted with Alport syndrome. Paul (29) has had two kidney transplants, and his brother, Mario (24) is currently awaiting a transplant. Another brother, Alex (27) has hearing and sight loss and will likely need a transplant at some point. Amy (20) has hearing loss as do all of her brothers.

Josephine’s four children decided to direct donations to the Alport syndrome Foundation to help a cure, if not this generation, then the next. Their friends and family raised more than $800 to help Alport syndrome patients.

Alport Awareness Month

In March, patients and families across the country spread awareness of Alport syndrome and kidney disease using social media, sharing information with family and friend, and hosting awareness and fundraising events in their communities.

The Alport Awareness campaign is conducted each March in connection with National Kidney Month to promote awareness of Alport syndrome and the risks of chronic kidney disease.

Broccolini 5K Run/Walk and 1-Mile Fun Run

More than 60 people attended the Broccolini 5K Run/Walk and 1 Mile Fun Run in Phoenix  to  raise awareness of Alport syndrome.

A  big thank you to Josh Grisa, who planned the event in honor of friends with Alport syndrome.

Big John’s Ice House Fundraiser

Carol and Chris Naquin hosted a fundraising event at Big John’s Ice House in honor of their two teenage sons who were diagnosed with Alport syndrome last year. More than 300 people attended the event, which included Texas BBQ, raffles and live and silent auctions. The event raised over $145,000!  Thank you to Carol and Chris and the many people who made this event such a huge success.

Fighting Alport syndrome Pool Party

Amy and Matthew Mylin hosted their third Fighting Alport syndrome Pool Party in honor of two of their children who have Alport syndrome. A beautiful day and a worthy cause brought out many supporters. The event raised over $6,000 for ASF.   Thank you, Amy and Matthew!

Mt. Baker Charity Climb

Tom Denham began his annual charity climb on June 19. This year he climbed Mt. Baker, a dormant volcano in northern Washington that is covered in glaciers, snow and ice. Tom has raised over $5,000 for this annual fundraising climb, bringing his fundraising total to over $15,000. His efforts are in honor of his daughter Rachel, who has Alport syndrome. In addition to his fundraising efforts, Tom appeared on a local TV talk show and the local paper also printed an article about him. Thank you for your tremendous efforts on behalf of ASF, Tom

ASF at NKF Walks

Local patients hosted booths at two National Kidney Foundation (NKF) Walks in June to raise awareness of Alport syndrome.

  • Chris brought a huge team of supporters to walk for Team Chris at the Silicon Valley walk in San Jose, CA.
  • Joy, the ASF Facebook administrator, hosted a booth at the Orange County walk in Irvine, CA.

Thank you, Chris and Joy!

Fat Ass 5K & Street Party for Charity

The annual Fat Ass 5K & Street Party for Charity was held in Springfield, IL, on May 10 and $15,000 was donated to ASF! The Fat Ass 5K & Street Party for Charity has donated $66,500 to ASF since 2010. Thank you to the organizers and participants who continue to support ASF each year.

LA Marathon

Erin Fitzgerald and Geoff Hackett have been running together since high school. On March 9 they participated in the LA Marathon. They dedicated their first marathon to raising awareness of Alport syndrome, a disease affecting Erin‘s brother, who is also Geoff‘s friend. Using the ASF fundraising page and the social media tools, Erin and Geoff raised over $5,600, nearly double their initial goal of $3,000. Thank you both for this tremendous effort!

Girls‘ Night Out

Rachelle Litt and her friends hosted an evening of fashion, food, and friends February 20 at PGA National Resort and Spa in Palm Beach Gardens. This is the second time ASF has been selected as the charity partner for the monthly event. Rachelle has three children who haveAlport syndrome. Thank you to Rachelle and her friends for planning such a fun event. They raised over $900 for ASF.

Scott Stark Tribute

Sydney Meister set up an online fundraising page in honor of her uncle, Scott Stark. Scott has Alport syndrome and received a kidney transplant last summer. “I would love to cure this disease not only for the love of my uncle, but for his two little girls: Rylie and Zoe,“ Sydney told ASF. “I am hoping to raise enough money to help researchers find a cure for my uncle‘s condition.“ So far, her efforts have raised over $2,700. Thank you, Sydney!

Paul Naquin Tribute

In September 2013, Jonathan Naquin (18) and his brother Christopher (16) were both diagnosed with Alport syndrome. One month later, Jonathan and Christopher lost their grandfather, Paul Naquin, to complications of surgery. The family wanted to support a charity that meant a lot to Paul and chose ASF because of the family‘s recent focus on Alport syndrome. They invited family and friends to make donations to ASF in Paul‘s memory and have raised over $2,700!

HOSA 5K Event

Nearly 40 participants and dozens of volunteers turned out for the HOSA 5K at Desert Vista High School on November 16. HOSA is the club for students interested in careers in medicine. Students chose to dedicate the event to ASF in honor of classmates Joe and Max Lagas, who have Alport syndrome. Joe and his mother, ASF president Sharon Lagas, both spoke and shared their stories during the race kickoff.

REM Memorial – San Diego

Nearly 50 people attended Allie Miller‘s birthday fundraiser on November 3 in memory of her father and brother, Robert Miller, Jr. and Robert Miller, III. Over $1100 was raised in their names over football and pizza, two of their favorite things. Thank you, Allie!

Benefit Dinner for Kevin Schnurr

Kevin Schnurr‘s benefit on July 12th at O‘Brien‘s Ale House in Coram, NY was a success in raising awareness of Alport syndrome, organ donation, and funds for ASF. Kevin raised almost $2,500 in donations! Kevin was shocked to learn the number of people who approached him at the benefit to tell him they knew someone on dialysis. This has inspired him to continue raising awareness for those with renal failure. Guests enjoyed great Irish food, home baked goods and sang along to songs performed by Kevin and his friends. Thank you Kevin!

Tom Denham‘s Half Dome Climb

Tom Denham successfully completed his Half Dome climb in June. His climb was in honor of his daughter Rachel, who has Alport syndrome. Tom also exceeded his goal of $5,000 raised for ASF.

Tom has pledged to raise $50,000 for ASF over a 10-year period by completing one climb per year. Stay tuned in January for the announcement of Tom‘s 2014 charity climb location. Thank you, Tom, for all you do for ASF!

Fat Ass 5K & Street Party for Charity

The annual Fat Ass 5K & Street Party for Charity was held in Springfield, IL, on May 11 and $15,000 was donated to ASF! The Fat Ass 5K & Street Party for Charity has donated $51,000 to ASF since 2010! If you want to join the event, please check their website for next year‘s race details. Thank you to all the organizers and participants of the Fat Ass 5K & Street Party for Charity for your support of ASF!

Arizona 5K for Healthy Kidneys

On March 24, ASF hosted the 6th annual Arizona 5K for Healthy Kidneys. Approximately 300 people turned out to participate in this run/walk event and enjoy the beautiful spring weather, raising over $35,000 for education, awareness and outreach.

The event included door prize raffles and a separate drawing for an iPad. Individuals are entered in the iPad drawing for every $100 they donate or fundraise. The winner of the drawing held on April 15 was Dawn Matesi, who was also the first runner in her age bracket to cross the finish line.

Arizona Gives Day

On March 20, Arizona nonprofits came together to raise awareness of the work they do for the community and to raise funds to continue their work. The event helped raise awareness of Alport syndrome and the Foundation, and raised $800.

We appreciate everyone who took part in this event.

Facebook Fundraiser

Arizona State Farm agent Dave Jackson dedicated February 2013 to the Alport syndrome Foundation. For every “like“ on his Facebook page, Dave donated $1 to ASF. Thanks to our many members and supporters, we raised $391!

Thank you for your support and a great big thank you to Dave Jackson for his generosity!

Pajama Day

On January 24-25, 2013, St John‘s Lambs Lot Preschool held a Pajama Day for all preschool classes. Over these two days, some 139 students were allowed to wear their pajamas to school on the day their class was assigned in exchange for a $1 (or more) donation towards the Alport syndrome Foundation.

ASF member Joy Toal‘s son is a student at the school and participated quite happily; it‘s not hard to convince a young child to wear their PJs to school! Each family received a friendly reminder with a brochure about ASF to help spread awareness of this rare disease. In the end, all those jammies raised over $230 on behalf of Alport syndrome. Thank you, Lambs Lot!

Casual Dress Day

Casual dress day at work is a favorite with employees everywhere – including with the staff at the New York State United Teachers (NYSUT). So when NYSUT‘s Employee Outreach Network (NEON) offered their members a chance to dress down for the day in exchange for a donation to ASF, they collected nearly $600.

Thank you to NYSUT, NEON and their generous members!

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