Hydrocephalus became part of Gary Chaffee’s life in 1981 when doctors discovered he had enlarged ventricles in his brain. Fortunately, his symptoms were mild, and he did not need immediate surgical intervention. In 2005, his symptoms worsened as he developed normal pressure hydrocephalus (NPH). Gary had a VP shunt placed to help alleviate his symptoms. A year later, his shunt failed and put Gary on medical disability.
Gary is a U.S. veteran and worked in submarine service with the Navy. He then had a thriving career as an executive in the pharmaceutical industry. His transition from active executive to being disabled was tough. However, he was eager to volunteer once he discovered that he was not alone and that his training and experience could help others dealing with hydrocephalus.
Gary began volunteering as a peer advisor with the Hydrocephalus Association (HA) in 2018. He has served as an outreach volunteer, on the Education Committee, on the Program Planning Committee, on the Strategic Planning Committee, and as a Community Network Leader. Gary has also taken a very active role in HA’s NPH outreach. He became a co-administrator of the HA NPH Support Group on Facebook in 2021, and he has been a member of the NPH Task Force since 2020
In 2022, Gary was nominated by HA to serve as a consumer reviewer and full voting member of the Peer Reviewed Medical Research Program (PRMRP) through the Department of Defense (DoD) Congressionally Directed Medical Research Program (CDMRP). The PRMRP was established in 1999 and has supported research across the full range of science and medicine. It aims to enhance the health, care, and well-being of military Service Members, Veterans, retirees, and their family members.
Archery for Avery
In 2020, when COVID hit, the Dalbey family could not participate in their local WALK to End Hydrocephalus in Colorado. That year, HA proposed that families do things that encouraged and empowered them, which they enjoyed. For Avery and her twin sister, Teagan, it was archery. So, the Dalbey family got together and spent some time participating in the sport of archery that Avery knows and loves.
This sparked an idea that has grown into an annual event, Archery for Avery.
Avery was diagnosed with hydrocephalus in utero. She had her shunt placed at seven weeks; then, she had two revisions by the time she was five months old. Before she was born, Avery’s parents, Damon and Stacey, were told that she would never walk or talk and would be in an infant state all her life. However, Avery proved them wrong, and she started walking when she was 16 months old. She has had a few delays, such as her speech being affected by a hearing impairment, but not anywhere near what the doctors first said.
The 2022 Archery for Avery event was held in July at High Altitude Archery in Longmont, CO. The attendance was so high that they took up nearly the entire facility. The all-ages event consisted of a Vegas 300 archery tournament for experienced archers and an area where less experienced archers could learn to shoot with the help of instructors. A raffle, door prizes, swag bags for all participants, and a Chick-fil-A lunch were also offered.
Around 100 people attended the event and raised over $8,000 between funds from the lunch, raffle, open shoot, and the tournament.
“With this event, I see the pride that Avery has in feeling good about being able to do something that she loves and she is good at. She would always participate in the WALKs, but she was never able to complete them. With this event, she is involved from start to finish and that gives her a feeling of pride and accomplishment.”
Avery’s mother, Stacey, is the backbone behind the planning and coordination of this event. She had volunteered with HA for many years and was previously a Community Network Leader for CO and WY. In addition to their participation in the Denver WALK to End Hydrocephalus since 2009, Stacey says this event provides so much more for Avery and their community.
As to her initial prognosis of being unable to walk or talk, Avery not only walks and talks, but dances and runs, sings and screams, and lives life to its fullest.
To learn more about Archery for Avery, visit support.hydroassoc.org/Avery
End Hydrocephalus Bike Night
On October 15, 2022, over 100 people came together for the End Hydrocephalus Bike Night in Houston, TX. This special night was held at Reserve Supply Company, owned by the Bruen family. The Bruen’s moved to Houston, Texas, from Lafayette, Louisiana, in 2010 to be closer to family and the Texas Children’s Hospital medical center for their boys.
Both of the Bruen’s twin boys, Ryder and Kai (16), have hydrocephalus. The twins have endured multiple hospital stays and weekly and monthly occupational, speech, and physical therapies for most of their lives. Between them, they have had 18 brain surgeries. They also both have cerebral palsy, which affects nearly 30 percent of children living with hydrocephalus.
Ryder and Kai’s Mother
“Our family has been involved with HA’s support network for many years. We wanted to use our available resources to do something good and give back. The community and support provided by HA is immeasurable.” said Heather Bruen. “The Community Network meetings assured us that we are not alone in this journey. Most recently, the teen virtual meetings have given the kids an opportunity to connect with a network of peers that offer a level of support we, mom and dad, aren’t able to give.”
The Bruen family opened the Reserve Supply Company in 2011, which centers around music, art, skateboarding, and early motorcycle culture. They have combined all of their passions into their business. This opened the door to hosting Bike Nights, and they couldn’t think of a better place to hold a fundraising event for the Hydrocephalus Association (HA).
Bike Night includes great music, food, drinks, many vintage motorcycles, and a raffle to benefit the HA. This year’s event raised just over $4,000. This would not have been possible without the generous brands and a few local businesses that donated items for the raffle and their supportive community that extended beyond Texas.
The Bruen Family hosts Bike Night a few times a year, but this one was explicitly dedicated to HA, and it is what set it apart from others. People were eager to participate and support our cause.
Heather adds that HA is essential to their family, and they will continue dedicating Bike Night to HA each year.
To learn more about End Hydrocephalus Bike Night, visit reservesupplycompany.com
Reef Woldt was born nine weeks early on June 17, 2016. He spent 62 days in the UC Davis Medical Center NICU, where Reef was diagnosed with hydrocephalus. Less than a month later, Reef had his first brain surgery to place a shunt in his right ventricle. Before Reef was 17 months old, he had five shunt malfunctions, requiring an additional five brain surgeries and a second shunt to be placed.
In 2018, his parents decided they didn't want their friends to put together a GoFundMe and instead started dreaming of ways to raise awareness and funds to help all those in need. They officially started their nonprofit 501(c)3 - Reef's Race for a Cure Foundation in April 2019.
They aim to help raise awareness for a condition most have never heard of. And to provide funding for research that will help to eventually find a cure. A tomorrow free from the fear that their shunt may malfunction at any moment.
On Sunday, September 9, 2018, the 1st annual Reef’s Run for Hydrocephalus Awareness was held. They raised an incredible $17,000 on the first run.
"Reef's Run started out as a way to connect with our community and families with hydrocephalus, to help other families in their time of need, and to bring awareness to hydrocephalus. I could never have anticipated it would turn into the huge success it has become today. The support our community has shown through the toughest of years brings tears to my eyes and warms my heart. We could not do what we do without their love and support. We have been able to give over $25,000 to families in need over the last couple of years, and we have more to give. I hope we can continue to make an impact in our community and help to one day be a part of finding a cure for hydrocephalus."
In 2019, the race grew to 245 participants, and another 50+ participated in the silent auction. This event raised over $38,000, more than double the first year.
2020 and 2021 provided some challenges. The California and Nevada wildfires postponed and ultimately made Reef's Run go completely virtual in 2020 with an online auction. In 2021, the Caldor fire caused the entire South Shore of Lake Tahoe to be evacuated, but that didn't stop them. They postponed the run by a few weeks and kept moving forward. They raised over $24,000 in 2020 and $37,000 in 2021.
Once again, the California and Nevada wildfire season proved challenging in 2022. The run looked like it would be a go, with the AQI at only 67 the night before the run; however, during the night, the winds shifted, and the AQI shot up to 485. At 5:00 am on race day, the decision was made to set up a modified 1-mile run and postpone by 2 hours in the hopes that the air quality would be more favorable, or they could at least hold their silent auction. More than half of the registered runners still joined, and five minutes into their 5th Annual Reef's Run, a bubble of clear sky blanketed the venue, taking the AQI from 189 to 38 until the end of the event. They raised over $44,000 last year thanks to their sponsors, volunteers, and a community that won't give up.