GLHF Headline News

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There's Still Time to Register for GLHF's Family Camp!

Join us for a weekend of fun and outdoor activities, April 28-29! 

GLHF's Family Camp is designed for children ages 5-9, along with their immediate family. Families can show off their camp skills, encourage new camper families and have a weekend full of fun and adventure.

New in 2018, we are offering a parent/guardian session to offer skills, tips and tricks on how to enhance and encourage every camper's new-found independence gained from summer camp. We want campers to get the most out of camp and this program can help teach parents or guardians how to keep the magic of camp alive throughout the entire year.

Also new this year, our Leaders-In-Training (LITs) will be joining us to put their skills to work assisting with camp programs and preparing them for summer camp. Our LIT Program is for teens who have outgrown their role as a camper and are moving into camp leadership positions. The three year program is open to all former campers ages 15-17.

Scott Arizala, Summer Camp Consultant & Trainer, will be working with LITs Friday evening to help them continue to build their programming skills. Scott will stay at camp for the weekend to work with parents - helping them build on the skills campers learn.

Find out more.

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GLHF's Inaugural Madison's Best Bloody Contest Has Sold Out!

Add yourself to the 2019 wait list

Gaining momentum from GLHF's 6th annual Milwaukee's Best Bloody Contest, we are brininging this incredibly popular event to the Madison area. Our Madison's Best Bloody Contest will be held this Sunday at The Edgewater.

Madison's Best Bloody will serve a sold out crowd of 425 people with 10 participating Madison-area bars and restaurants. "We expect this event will grow as its popularity increases," said Jess Kveen, Special Events Coordinator. "Watch for ticket information early next year!"

Just like with Milwaukee's Best Bloody, Madison's Best Bloody raises critical funds for the bleeding disorders community in Wisconsin.

Learn more about Madison's Best Bloody. You can also visit our Facebook Event Page.

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Milwaukee's Best Bloody Drew Sold Out Crowd of 1150!

In its 6th year, Milwaukee's Best Bloody, which was held on February 25 at the Italian Community Center, drew a sold out crowd of 1150, featured 13 Milwaukee-area bars and served 20,500 Bloody Marys!

2018 Milwaukee Best Bloody Winners:

Best Overall: Steny's Tavern
1st Runner Up: Crafty Cow
2nd Runner Up: Pepi's Pub and Grill
Best Mix: Pepi's Pub and Grill and Timber Hill Winery
Most Milwaukee: Steny's Tavern
Most Inventive: Timber Hill Winery
Most Like a Meal: The Loaded Slate 

Thank you to all of this year's participants for making this event a wonderful success!

Find out more about Milwaukee's Best Bloody.

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In Memoriam - Ronald W. Bark

The Wisconsin bleeding disorders community lost a friend, an advocate and a man with a wild sense of humor in February. Ronald W. Bark passed away on Friday, December 16th, 2017. 

GLHF is saddened by the passing of Ron, who is a native of Wisconsin. He was an active member of the Wisconsin bleeding disorders community. We join Ron's friends and family in mourning his passing.

Ron's obituary can be found here.

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Mark Your Calendar! GLHF's Wisconsin Bleeding Disorders Conference is June 8-10 in Wisconsin Dells. 

Every year, GLHF's Wisconsin Bleeding Disorders Conference provides opportunities to attend educational sessions presented by experts, meet with health care and industry professionals, and form important connections with peers affected by bleeding disorders.

This year we are excited to welcome Music Therapist Tim Ringgold, MT-BC, who will be giving our keynote address. Tim will lead an empowering and interactive musical session teaching a simple, 4-step formula for overcoming obstacles. 

Other educational session topics include a question and answer discussion with a physician; Bleeding Disorders 101; stress and pain management; advocacy; mental health issues related to bleeding disorders; sibling support information for parents; clotting factor functions; and navigating health care.

Learn more about this year's conference.

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Registration for Camp Klotty Pine is now open!

GLHF is proud that Camp Klotty Pine is celebrating its 5th year this summer, July 9-14, in Wautoma, WI. Last summer, more than 30 children from all over the state headed to camp where they learned life skills necessary to independently manage their bleeding disorder, made life-long friendships, tried new camp activities and participated in traditional camp experiences such as swimming, fishing and archery!

"We are very excited to continue building on the tremendous success of Camp Klotty Pine," said Karin Koppen, Camp Director. "We are incredibly proud that we can continue to offer children living with a bleeding disorder a traditional camp experience full of activities that are safe, fun and most importantly, allow kids to be kids."

Camp Klotty Pine is a week-long summer camp for children with bleeding disorders ages 7-15.

Learn more about camp and register today.

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Wisconsin Governor Scott Walker Proclaims March as Bleeding Disorders Awareness Month

The Proclamation states that Bleeding Disorders Awareness Month "generates greater awareness and understanding of not only hemophilia but all inheritable bleeding disorders, including von Willebrand disease, which alone impacts more than 3.2 million people; and this Awareness Month fosters a greater sense of community and shared purpose among indivuiduals with all inheritable bleeding disorders."

Furthermore, the proclamation states that "this Awareness Month elevates awareness of and engagement in the inheritable bleed disorders journey to the general public, enabling the prevention of illness, unnecessary procedures and disability." 

GLHF thanks the Governor for this proclamation.

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Registration for NHF's 2018 Bleeding Disorders Conference is Now Open! 

It's NHF's 70th Anniversary. And they're celebrating with a new name for their signature event!

Please join us at NHF's Bleeding Disorders Conference, October 11-13, 2018 in Orlando, FL. Registration is open!

Learn more and register today

INDUSTRY NEWS

Rebinyn (Coagulation Factor IX (Recombionant), GlycoPEGylated) is Now Available in the U.S. 

Novo Nordisk announced that Rebinyn (Coagulation Factor IX (Recombinant), GlycoPEGylated) is now available in the United States. Rebinyn is an extended half-life injectible medicine used to treat and control bleeding in adults and children with hemophilia B. It can be used to treat bleeds when they occur and to help manage bleeding during surgery. Rebinyn is not used for routine prophylaxis or for immune tolerance induction in patients with hemophilia B. 

View full press release.

Grifols Donated More Than 25 Million International Units of Blood Clotting Factor in 2017 

On April 16, Grifols, S.A., announced it has donated more than 25 million international units (IU) of blood clotting factor medicines over the last year. This donation is part of Grifols' commitment to provide a minimum of 200M IU to the World Federation of Hemophilia (WFH) Humanitarian Aid Program over eight years starting in 2014. An estimated 400,000 people around the world have hemophilia, yet only 25% receive adequate treatment.

View full press release.


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