Dandy-Walker Alliance

03/20/2026

Hi DW families! Krystal Lacey, the Northeast Coordinator for the Dandy Walker Alliance, is currently working on proclamations for towns in CT and CT as a whole state for Dandy Walker and Hydrocephalus Awareness. Please reach out to Krystal through her DW email if you:
-would like the template for drafting a proclamation for your town/state.
-if you are from CT and would like to be a part of a town proclamation reading/photo-op next month.
-also any other CT located families it would be great to connect with in general! Am hoping to coordinate a May Fundraiser event here in CT.
Please feel free to reach out, email is Krystal.lacey@dandy-walker.org (it's also on the Dandy Walker Alliance website).

Thank you

Send a message to learn more

03/13/2026

FORE-get your plans this August 24!

We’re teeing up for a day of laughs, friendly competition, and a whole lot of heart at the charity golf fundraiser for the Dandy-Walker Alliance in beautiful Connecticut.

Whether you’re a scratch golfer, a professional ball-loser, or just here for the snacks and sunshine, you’re officially invited. Expect mulligans, questionable swings, and great people, all for an exceptional cause.

01/24/2026

Turning 20 does come with free stuff.

To celebrate the 20th anniversary of the Dandy-Walker Alliance, we’re giving away a FREE pack of 20 awareness wristbands.

No candles, no awkward singing, no donation required - just click, claim, and rock your wrist with purpose.
👉 https://dandy-walker.redpodium.com/20th-anniversary-wristband-giveaway
Get yours before they disappear faster than cake at a birthday party. 😉

12/02/2025

Today is Giving Thursday and we are excited to launch our Holiday Giving Campaign. As 2025 closes, The Dandy-Walker Alliance is gearing up for our 20th anniversary in 2026! We are very excited about this milestone and hope that the community will continue their generous support to raise awareness, support families, and advance critical research.

Get tickets online for 2025 Giving Season with the Dandy-Walker Alliance here.

11/07/2025

We’re excited to attend the Hydrocephalus Association’s 2026 National Conference on Hydrocephalus, , taking place July 23–25 in Indianapolis!
This dynamic event brings together patients, families, researchers, and clinicians for 70+ educational and interactive sessions focused on improving lives impacted by .
We’re looking forward to connecting, sharing, and supporting this inspiring community! Learn more: www.hydrocephalusconference.org/

05/31/2025

As Dandy-Walker Awareness Month comes to a close, we want to thank everyone who shared their story and helped raise awareness this month! We want to give a special thank you to the Maryland community for showing up for Thursday's Brewing Awareness event at Manor Hill Brewing.

Even though May is over, we're excited to continue our awareness, support, and research efforts throughout the year!

05/31/2025

As Dandy-Walker Awareness Month 2025 conludes, we would like to thank each family who took part in our 31-Days of Awareness and Giving Campaign. So, a huge thanks to Rebecca and entire family!

To learn more about Rebecca's Dandy-Walker journey and make a donation to Dandy-Walker Alliance's work in his honor, please visit https://dandy-walker.givingfuel.com/rebecca-31-days-of-awareness-and-giving

05/30/2025

In this final week of Dandy-Walker Awareness Month 2025, we would like to thank each family who took part in our 31-Days of Awareness and Giving Campaign. So, a huge thanks to Lisa and Carter's entire family!

To learn more about Carter's Dandy-Walker journey and make a donation to Dandy-Walker Alliance's work in his honor, please visit https://dandy-walker.givingfuel.com/carter-31-days-of-awareness-and-giving

05/29/2025

In this final week of Dandy-Walker Awareness Month 2025, we would like to thank each family who took part in our 31-Days of Awareness and Giving Campaign. So, a huge thanks to Bridget and Leo's entire family!

To learn more about Leo's Dandy-Walker journey and make a donation to Dandy-Walker Alliance's work in his honor, please visit https://dandy-walker.givingfuel.com/leo-31-days-of-awareness-and-giving

05/29/2025

In this final week of Dandy-Walker Awareness Month 2025, we would like to thank each family who took part in our 31-Days of Awareness and Giving Campaign. So, a huge thanks to Fahima and Yanis' entire family!

To learn more about Yanis' Dandy-Walker journey and make a donation to Dandy-Walker Alliance's work in his honor, please visit https://dandy-walker.givingfuel.com/yanis-31-days-of-awareness-and-giving

05/28/2025

In this final week of Dandy-Walker Awareness Month 2025, we would like to thank each family who took part in our 31-Days of Awareness and Giving Campaign. So, a huge thanks to Debra and Willow's entire family!

To learn more about Willow's Dandy-Walker journey and make a donation to Dandy-Walker Alliance's work in her honor, please visit https://dandy-walker.givingfuel.com/willow-31-days-of-awareness-and-giving

Debra McNamara

05/28/2025

In this final week of Dandy-Walker Awareness Month 2025, we would like to thank each family who took part in our 31-Days of Awareness and Giving Campaign. So, a huge thanks to Austin, Jamie, Lisa, and Austin's entire family!

To learn more about Austin's Dandy-Walker journey and make a donation to Dandy-Walker Alliance's work in her honor, please visit https://dandy-walker.givingfuel.com/austin-31-days-of-awareness-and-giving

Austin's Dandy-Walker Journey Lisa Hulsey Jamie Hulsey