Hope in a Haircut? Introducing the Haircuts for Hydrocephalus Challenge!

A note from Team Hydro Co-founder Peter Finlayson

My beautiful sister Kate died when she was just 26.  She taught me a lot about how to live life. A few years before she passed, she was preparing for YET ANOTHER brain surgery to treat her hydrocephalus, which meant among other things, lost hair.With my brother Samuel and a few friends (Andrew RogersJosh Baylor) we surprised her by driving home from college and letting her shave our heads to show our love and support.

Today there are 1 million Americans afflicted by hydrocephalus,No alt text provided for this imagemaking it a surprisingly common but still little-known condition. Sadly brain surgery remains the only treatment. There is no cure. Left untreated it can be fatal. Many with hydrocephalus endure numerous brain surgeries over the course of their lives. In fact, on average someone endures a brain surgery to treat their hydrocephalus once every 15 minutes. My sister Kate endured over 150 such surgeries.In memory of Kate and in solidarity with all the hydrocephalus heroes who shave their heads for brain surgery, today I accepted The (bad) Haircuts for Hydrocephalus Challenge…and let my little barbershop quartet shave my head (watch the timelapse video below).

Team Hydro is the organization that we founded to raise funds and awareness for hydrocephalus research. We are 100% volunteer run and every penny we receive goes directly to research. You can read more about our research grants here. It is truly remarkable stuff.

Team Hydro’s philosophy in funding research grants is simple:

  • We support research with the potential to move science towards a cure for Hydrocephalus, rather than just small variations on the clinical status quo. This includes projects that seek to uncover the basic biology underlying this disease, to determine and halt causative factors, and to generate innovative new approaches to therapy.
  • We support promising researchers with potential for long-term impact on the field. The lifeblood of academic research in the U.S. is, generally speaking, large federal grants issued via the NIH, the DoD, and other public research agencies. We have no intention to replace these agencies! However, it is currently impossible for new researchers (especially those interested in under-funded conditions like Hydrocephalus) to qualify for lab-sustaining grants from these departments without preliminary data. By the same token, commercial R&D typically enters the foray only after preliminary data developed via private and public investment. At Team Hydro, we seek to provide hydrocephalus researchers with seed funding that will enable them to assemble the critical mass of data necessary to bridge the gap towards the major public grants (and/or commercial development). In doing so, we hope to help their labs to become self-sustaining entities for research, discovery, and the training of new talent that will continue in the field for many years to come.

To this end Team Hydro has raised over $800,000 to date and supported a range of research grants in the U.S., Australia, and Canada. Importantly, all our grantees are selected as a part of rigorous peer review process in conjunction with expert panels through partnership with the Hydrocephalus Association. Finally, as we proudly state elsewhere, all Team Hydro fundraising dollars are applied directly towards grant funding — not overhead costs.

I invite you to be a part of Team Hydro. Please take part in this challenge. It is the perfect way to make the world a better place from the safety of your home during this uncertain time.

  1. Chip in. (Donate herehttps://donate.teamhydro.org/haircut)
  2. Cut your hair. (And post a photo or video to Social Media)
  3. Challenge your Friends to do the same!

#teamhydro #haircutsforhydro

Another million dollar research update! Q&A with Dr. Jennifer Strahle

Team Hydro is incredibly proud to announce an exciting research update!

Dr. Jennifer Strahle, recipient of a 2016 Innovator Award from Team Hydro, has been awarded a $2.4 million dollar grant from the NIH to work on Hydrocephalus. This award is a direct result of the data she generated using funds from Team Hydro and the Hydrocephalus Association, and is yet another example of our research investment thesis in action.

To learn more about Dr. Strahle and her research, see our interview with her below.

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Dr. Jennifer Strahle is a practicing neurosurgeon and the current director of the Pediatric Neuro Spine Program at St. Louis Children’s Hospital.  She is also an assistant professor at the Washington University School of Medicine, where she runs her own research laboratory.

In 2016, Team Hydro was proud to sponsor Dr. Strahle by funding an Innovator Award to investigate the role of iron in mediating ventricular injury in posthemorrhagic hydrocephalus. This seed grant has now born fruit, as the data it produced has resulted in a $2.4 million dollar follow-on grant from the National Institutes of Health.

We caught up with Dr. Strahle to hear about what brought her into Hydrocephalus research and to learn more about the exciting work going on in her lab.

TEAM HYDRO: Thanks so much for taking the time to chat with us!  Amongst our grantees, you are one of a few who has opted for a dual-career as both a physician and a researcher.  What made you want to become a surgeon-scientist?

Dr. Strahle:  I have always had a fascination with the brain, dating back to my days as a neuroscience major in college. After college, I worked for two years in a research lab studying Alzheimer’s disease. Although I greatly enjoyed this work and felt like I had the potential to make a difference in people’s lives, it seemed that becoming a surgeon-scientist would allow me to be maximally impactful – being able to directly improve the lives of children with brain diseases while discovering new ways to treat or prevent these same diseases in my lab.

TEAM HYDRO:  What motivates you to work on hydrocephalus specifically?

Dr. Strahle:  Over the course of my lifetime, we have seen tremendous progress in cancer care, treatment of heart attacks, and organ transplantation. Yet hydrocephalus care has remained largely unchanged for the past fifty years. As a pediatric neurosurgeon, I see first-hand the devastating toll that hydrocephalus has on children and their families, and the enormous potential that improving care for these children can have for generations.

TEAM HYDRO:  You certainly don’t have to convince us on that point!  Thank you for working on this much under-appreciated condition. Could you tell us a bit about your current work in St. Louis?

Dr. Strahle:  I split my time roughly equally between my pediatric neurosurgical practice at St. Louis Children’s Hospital and my lab at Washington University School of Medicine. In the lab, we are studying the role of cilia, tiny hair-like structures that line the ventricles, in the development of hydrocephalus after neonatal intraventricular hemorrhage. We are first seeking to more clearly understand the ways that the initial bleed leads to hydrocephalus, after which we hope to develop ways to minimize or prevent the damage to the underlying brain. My clinical practice focuses on hydrocephalus, brain tumors, and diseases of the spine. Running between the operating room, the clinic, and my lab can make for some hectic days, but the synergies between the different components of my job are energizing and make for a wonderful career.

TEAM HYDRO: What challenges do you see as a surgeon treating patients with hydrocephalus?

Dr. Strahle:  As with any illness affecting very young infants, I view the most challenging part as helping patients and families cope with all the unknowns – infancy is a challenging time under the best of circumstances, and hydrocephalus specifically can be unpredictably variable in a way that causes enormous stress on families. From a more tangible perspective, having a shunt placed with the possibility of multiple revisions is a very real challenge for many children. My goal as a researcher is to eliminate the need for shunts for as many children with hydrocephalus as possible.

TEAM HYDRO:  Eliminating the need for shunts is truly the ultimate dream in this field.  As we work towards that goal, what are some of the big opportunities you see for future hydrocephalus research?

Dr. Strahle:  As I alluded to above, the major opportunity in hydrocephalus research is to develop preventive treatments to eliminate or minimize the development of hydrocephalus. Our hydrocephalus researchers at Washington University are studying multiple mechanisms – iron metabolism, cilia injury, ependymal injury, and neural cell migration to name a few – that all likely play some role in the development of hydrocephalus and its coincident injuries. I don’t yet know which one of these pathways could ultimately lead to a cure for some or all children who would otherwise develop hydrocephalus, but I truly believe we will get there during my career.

TEAM HYDRO: Wonderful. One last question for our readers and donors: could you comment briefly on the role that grants like your Innovator Award play exciting new labs like yours?

Dr. Strahle:  Support from the Innovator Award has been instrumental in allowing my lab to obtain preliminary data to apply for extramural NIH funding. With this initial support, we were able to identify several novel therapeutic targets within the iron handling pathway. This will be the focus of our upcoming areas of investigation and our NIH grant.

TEAM HYDRO: We sure are proud and grateful to be supporting researchers like you, Dr. Strahle!  Thank you so much for all your work, and we look forward to continuing to follow your exciting career moving forward.  

Learn more about the grants we sponsor at teamhydro.org/our-research/, and donate today at donate.teamhydro.org.

Age group heroes complete successful swims for hydrocephalus

Team Hydro is thrilled to announce yet another successful pair of fundraising swims by two incredible age group swim teams: The Dorset Dolphins of Marietta, GA, and the Little Falls Penguins of Bethesda, MD.

The Dolphin Dash took place on June 22nd, with 47 athletes completed a record 73 miles and raising almost $15k.  Inspired by their own Lilly Beck (a swimmer and patient), this year’s group from Georgia included swimmers as young as five years old!

The Little Falls Penguins completed a swim of their own on July 11th, with more than 60 registered swimmers. As always, the Penguin’s enthusiasm in supporting the cause is incredibly inspiring. Like the Dolphins, the Penguins are also motivated by a special young swimmer-patient: Team Hydro’s inspiration Kate, who once set records in the very pool in which the Penguins completed their fundraiser.

Taken together, The Dorset Dolphins and Little Falls Penguins have raised nearly $20,000 for Hydrocephalus research so far this summer…and they’re still just getting started!

You can support the swimmers by donating at: donate.teamhydro.org/event/swims-for-hydrocephalus-2019/

Voices of Hydrocephalus

Listen to the voices of the patients, parents, physicians, and reseachers of Hydrocephalus.  This striking video was created by Craig and Vicki Brown and the Hydrocephalus Association. It was featured at the recent event Vision Dinner: A Time for Awareness, A Hope for a Cure.  Team Hydro is proud to be a founding partner of this effort.

DONATE HERE! 

Thanks to generous overhead sponsorship, 100% of donations will fund research efforts.

Boston Harbor Swim at Success!

Team Hydro completed its final swim of the season, as our swimmers crossed the waters on the Hahbah on Sunday, September 9th.  Some 25 swimmers successful made the crossing as several dozen additional Team Hydro volunteers helped shepherd the swimmers in kayaks. 

Team Hydro members once again came from a very interesting range of backgrounds — including several full-time hydrocephalus researchers, a venture capitalist funding the development of a brand-new non-shunt surgical procedure to treat the condition, undergraduates and graduate students from throughout Boston, and professionals ranging from Philadelphia to California.

After getting acquainted and discussing the exciting work going on at Team Hydro, we hit the waters!  

 

As always, a great time was had by all.  In addition, quite a few hydro swimmers made their way onto the podium!

To all those who participated with Team Hydro this year, by land and by sea, thank you for another great season!

And, as always, don’t forget that the cause isn’t finished!  Go to donate.teamhydro.org to support of efforts to find a cure for Hydrocephalus!

Team Hydro completes another successful Alcatraz Swim!

The weather was warm and spirits were high as Team Hydro completed its 13th crossing from Alcatraz Island into Aquatic Park, San Francisco.  42 swimmers from across the country joined our ranks and raised more than $50,000 in the process!

One thing that made this year’s swim particularly special was the participation of three hydrocephalus patients:  the fantastic veteran swimmer-patients Kyle Voulgaris and Kate Damrell, as well as six-month-old Amelia Coury (represented in the water by her father Tom).

Prior to the swim, we heard messages and updates from our founders, and the touching and inspiring accounts of how hydrocephalus has impacted the families of Kate, Kyle, Tom, and Pam.  They communicated our shared optimism but also our shared resolve to provide a better future for millions who suffer from hydrocephalus.

We also got to hear an exciting preview of some major progress update in our funding efforts (official announcement forthcoming!).

After that, it was off to the boats and into the water!  As you can see, this year was really a blast.  Conditions were perfect and the company could not have been any better.  As always, our volunteers on land and in the water did an amazing job at helping everything to run smoothly and safely.

You can see the complete results of the swim here.  Among the highlights were some amazing performances by Kyle Voulgaris (25:19.6), Kerra Bispo (28:46.7), Ryan Auker (28:55.6), and Carly Wickman (30:24.9).

Thank you to all who made this year special.  And don’t forget to support the cause!

See you next year!

Donate to support the swim here!

Team Hydro Set to Conquer Two Coasts in Back to Back September Swims!

Labor day weekend may mark the end of summer for many folks, but for TEAM HYDRO it marks the beginning of two amazing events aimed at raising Awareness and Research funds to combat Hydrocephalus!

First up, on September 1 the Team will once again enter the icy waters of the SF Bay and Escape Alcatraz in the 2nd Annual Team Hydro Swim For Hydrocephalus! As most know, the Team already participated in the Sharkfest Alcatraz swim back in June of this year. But the work we are doing cant stop there while people are still suffering from this devastating condition — so we will hit the water again.  This Alcatraz Swim, produced by and for Team Hydro, will certainly prove once again to be an exciting and inspiring event as one and all join together to fund hydrocephalus research.  Team Members will range in age from teens to septuagenarians, and include NCAA champions as well as swimmers living with hydrocephalus.  Swimmers will meet at 8:15am, and 0nland supporters can expect to see swimmers reaching the beach at Aquatic Park beginning around 10:30am.  We cant wait to see you in San Francisco on Sept 1!

Raising research funds is the mission of Team Hydro so swimmers, volunteers, and on-land supporters alike have been working hard to acquire donations in support of their Swim for Hydrocephalus.  Thanks to the generosity of Genentech and other private funding, 100% of these donations (along with all registration fees collected) will go directly to fund hydrocephalus Research!  

Following the Alcatraz Swim, Team Hydro members will gather across the continent the very next week, to cross the Boston Harbor on September 9th!  Joining this swim will be students and professors from Harvard and MIT, family members of people living with hydrocephalus, and even a grandmother.  

Team Hydro is working so hard in order to fully fund more important research aimed a finding a cure for this condition.  Hydrocephalus is the cause of more children’s brain surgeries than any other condition, and affects people of all ages from infants to oldest adults!

Can you help us FUND a CURE?  PLEASE donate here!!

Nothing can Stop the Penguins!

Despite soaring temperatures followed by thunderstorms that closed the pool for the afternoon session, the Penguins of Little Falls swam today for hydrocephalus!

And boy, did they swim — over 65 miles, in fact!  The team got off to an early start in this their 7th amazing swim for hydrocephalus.  Swimmers ranging from age 5 to 18 swam as far as possible in hopes of finding a cure for the life-threatening condition which took the life of a former teammate.

Each swimmer wore a bracelet honoring a person with the condition as inspiration to help them keep going when the going got tough, just as hydrocephalus patients must do every single day. 

These dedicated and compassionate swimmers also made cards in the sweltering heat for hydrocephalus patients which will be distributed to patients in hospitals across the country.

When the pool closed early due to storms, the team took their efforts to a local Chipotle where they continued to raise funds for important research! 

Team Hydro couldn’t be prouder to be affiliated with the incredible Penguins of Little Falls.  We thank each an every Penguin, as well as their coaches, parents, friends, donors, and on-land supporters for the great work they continue to do to ensure that one day a cure will be found for this difficult condition.  Team Hydro would especially like to thank team parent, Sarah Farnsworth, who once again organized this incredible event!

If you would like to donate to the cause and support the Team’s effort, you can do so at https://donate.teamhydro.org/SwimsForHydro2018

Go Team Hydro!

Go Penguins!

Let’s Fund a Cure!  

Dolphins “Dash” to Amazing Success!

The Dorset Dolphin Swim Team of Marietta, Georgia took to the water on Saturday and raised over $11,000 (and counting!) for Hydrocephalus Research.  This marked the 3rd Annual Dolphin Dash for Hydrocephalus!   This incredible Team Hydro event, organized by parents Anna & TJ Beck and Crysie Grelecki, reached new heights this year by increasing not only the amount of dollars raised, but also the number of participants swimming to beat this difficult condition affecting the brain.
 
This year Dolphins recruited coaches, friends, family and even swimmers from opposing teams to help them in their quest to find a cure for the life-threatening condition. Each swimmer raised much needed research funds and awareness with  every stroke, while on-land supporters and donors cheered them on from the deck.  A local radio station was also on hand to spin tunes and support these amazing young people in their quest to help others through their swimming.

The day got off to an inspiring start when young Dolphin swimmers Lily and Parker, who both live with shunted hydrocephalus, addressed the crowd along with their parents and Coach (who coincidentally has a young nephew named Charlie with hydrocephalus).  Lily and Parker then swam the first lap together as the rest of the swimmers cheered them on.  Incredibly, these 3 young people have already endured 9 brains surgeries in an attempt to treat their hydrocephalus! 

Lily and Parker’s  presence and the  inspiring words spoken, made the cause real for all those gathered that morning. Every person present was moved by the courage of these young kids who live with ongoing uncertainty  every day–knowing they could need another brain surgery at any moment. 
 
The group also learned more about the condition of hydrocephalus itself– how doctors are not yet certain what causes it, how it can happen to people of all ages from tiny premature babies to older adults, how doctors can’t cure it, and about what it feels like to live with a  condition for which  the only treatment  requires brain surgery!   

Thank you Lily and Parker for being willing to share your story to help us raise awareness and research funds which will help others like you in the years to come!

Thank you also to ALL the Swimmers, donors, sponsors, and on-land supporters who helped make this year’s Dolphin Dash such an enormous success!  

As with every Team Hydro event, EVERY dollar raised will be used to support research aimed at finding new, non-surgical treatments and ultimately a cure for hydrocephalus!  We cant wait for the day that Lily, Parker, Charlie and others with hydrocephalus will not need undergo any more brain surgery.  

If you want to support the cause you can still donate to the Dolphin Dash here!

You can learn more about Team Hydro Research here.

Check out pictures from the event below.

Go Dolphins!
Go Team Hydro!

Together we WILL Fund a Cure for Hydrocephalus!
 
 
Swimmers of all ages participated in this great event!
 

With each stroke, swimmers raised funds and awareness for hydrocephalus!

 

Lily and Parker are two swimmers on the Dolphins Swim Team who live with shunted hydrocepahlus.

 

Volunteers help keep track of all the laps!