New England Hemophilia Association

07/23/2025

Yesterday, WFSB - Channel 3 Eyewitness News spotlighted 13-year-old Waylon Page and his remarkable efforts to help pass HB 7200 in Connecticut. Now officially signed into law by Governor Ned Lamont, the legislation requires bleeding control kits in all public buildings, along with training and certification for first responders.

Waylon spent months partnering with his State Representative, Irene Haines—helping to introduce the bill, testifying before lawmakers, meeting with elected officials, holding a press conference, and even leading a Stop the Bleed training at the Capitol. Incredible work, Waylon—thank you for your passion, dedication, and leadership! Watch the interview, below, to learn more about this incredible journey.

13-year-old Waylon Page of Haddam was confidently testifying in front of lawmakers in Hartford.

07/22/2025

We are now just TWO WEEKS away from our Annual Golf Tournament and Raffle! This year, you could win one of four amazing prizes, like this Apple HomePod Smart Speaker!

Raffle tickets are $10 each, three for $25, or ten for $50. You don't need to be present at our Golf Tournament to win. See all of our amazing prizes and get your tickets before August 4 at: www.nehagolf.org.

07/21/2025

This July, we proudly celebrate National Minority Mental Health Awareness Month and Disability Pride Month!

Minority Mental Health Awareness Month shines a light on the unique mental health challenges faced by racial and ethnic minority communities. Together, we can break stigma, raise awareness, and promote access to culturally responsive care. Disability Pride Month honors the strength, diversity, and achievements of people with disabilities. It’s a time to celebrate identity, advocate for accessibility, and recognize the impact of the Americans with Disabilities Act (ADA), signed 35 years ago. Let’s use this month to celebrate, educate, and advocate for mental health equity and disability justice: https://bit.ly/mhm-july25

07/18/2025

In a few short weeks, Amanda Madden is running the Falmouth Road Race with Team NEHA for the first time! As an avid runner, she jumped at the opportunity to help her friend, and fellow Team NEHA Runner, Heather Craven, support an organization that means so much to her. Thanks for joining us, and welcome to our team, Amanda!

Help Amanda reach her fundraising goal at: bit.ly/am-frr

Learn more about Team NEHA and our runners: bit.ly/frr2025

07/17/2025

On Sunday, August 3, we're hosting an afternoon of fun and friendly competition at Topgolf in Cranston, RI with pro golfer, Perry Parker!

During lunch, Perry will share his story about being a professional athlete with hemophilia. He'll also provide you with tips and tricks to improve your swing or step up your golf game. Golf clubs provided, and space is limited. Sign up today by clicking below!

On Sunday, August 3, we hosted an afternoon of fun and friendly competition at Topgolf in Cranston, RI!

07/16/2025

Last month at Family Camp, we unveiled our newly redesigned and relocated Brick Garden. Since 2017, community members have purchased bricks to honor loved ones, celebrate milestones, and thank those who have supported them on their bleeding disorder journey. Due to overwhelming support, we outgrew the original location and, after working with Geneva Point Center, decided to relocate the garden to a peaceful, permanent location within GPC’s Labyrinth.

NEHA Board President and retired architect Nancy Messina designed the new layout, with invaluable help from community members, Tim and Brenda Sharpe, who volunteered countless hours to move and rebuild the garden. Tim’s employer, D.S. Jolie Landscapes, LLC, generously donated materials and supplies, and teens in Adventure Club installed the newest bricks during Camp this year as part of their annual service project. Thank you to everyone who made this possible, and to Geneva Point Center for providing this special space for our community.

If Camp has been meaningful to you or a loved one, consider honoring them with a brick, which will be installed next summer. Learn more and purchase a brick here: newenglandhemophilia.org/bricks

07/15/2025

Next Wednesday, July 23 at 7 PM, we are hosting an interactive virtual educational presentation with Pfizer to help you learn more about their new once-weekly subcutaneous treatment option for patients, ages 12 and up, with hemophilia A or B.

Attendees will receive resources from Jill Coyle MBA, BSN, RN, Pfizer’s patient navigator. After the presentation, there will be a question and answer period. Sign up below!

On Wednesday, July 23 at 7 PM, we are hosting a virtual educational presentation with Pfizer.

07/14/2025

Only a few spots remain for our Family Fun Day at Lake Compounce! Sign up today to join us on Saturday, August 16, as we host an exciting day of connection and education for families. The day will begin with educational sessions in Rocky Hill, CT, before heading over to Lake Compounce Amusement Park, located near the hotel.

Educational sessions will focus on topics that are especially relevant to families with children under the age of 10 who have a bleeding disorders. Space is limited.

On Saturday, August 16, we are hosting a day of fun, connection and education for families in Southern New England.

07/11/2025

Next month, Ciera and David Stewart are once again lacing up their running shoes for the Falmouth Road Race with Team NEHA! They're running to support their two children, who both have hemophilia. Their son is a strong, energetic, and fun-loving 3 year old with severe hemophilia, while their 7 year old daughter also has with mild hemophilia. Ciera herself shares that diagnosis, making this cause deeply personal for their entire family.

Learn more about our runners and help Ciera and David reach their fundraising goal at: bit.ly/frr2025

07/10/2025

Families in Northern New England are invited to join us for a roaring-good time on Sunday, August 17! Join us for a day of fun at The Woodshed in Manchester, ME, followed by an afternoon nearby at DEW Haven Zoo and Rescue.

The goal of this event is to help families connect with others in the bleeding disorders community while enjoying fun, engaging and educational activities. Sign up below.

On Sunday, August 17, we are hosting a day of fun, connection and education for families in Northern New England.

07/09/2025

At just 13, Waylon Page is a Falmouth Road Race veteran—running his fourth year with Team NEHA. Despite living with a Qualitative Platelet Disorder, he keeps pushing to run faster and stronger. This year, he's also taken on advocacy, working to pass a Connecticut law requiring Stop the Bleed kits in public spaces. We're proud of you, Waylon!

Help Waylon reach his fundraising goal at: bit.ly/waylor-frr

Learn more about Team NEHA and our runners: bit.ly/frr2025

07/09/2025

A few spots remain for our Annual Men's Retreat later this month! Sign up today to join us from Friday, July 25 to Sunday, July 27, at the beautiful Mount Snow Resort in West Dover, VT.

This weekend getaway will include educational sessions, health and wellness workshops and breakout discussions—all in a relaxed, supportive environment. Attendees will also enjoy exploring the mountain with hikes, evenings at the fire pit and a friendly casino night along with other social activities. Sign up below!

Our 3rd Annual Men's Retreat will be held from Friday, July 25 to Sunday, July 27, at the Mount Snow Resort in West Dover, VT.