GLHF Update


 

Wisconsin Hemophilia Walks Were a Success!

There's a tremendous amount of energy and comradery when more than 55 dedicated walkers form 44 teams to raise more than $84,000! Every year, walkers put in hours of hard work to raise dollars and awareness by building their walk teams, hosting fundraisers, sending out letters to family and friends and following up with donors - all to help us reach our fundraising goals.

Why do you walk?

The Ducks - Eve Dutkiewicz

"This is the second year my team has walked. Our team supports Hunter and Henry. We walk to support the bleeding disorders community and help bring awareness. Our favorite part is the exciting beginning when all the teams are let out of the gates for the walk. Also, living with hemophilia is expensive and usually not fun but for one day our family is at the zoo together; enjoying the animals because of hemophilia."

Kohler's Strollers - Laurie Kohler

"Kohler's Strollers was our original walk name approximately nine years ago - when our kids were actually in strollers. This year we are walking in honor of my husband, Michael Kohler, who organized our original walk team and was a dedicated member of the GLHF Board for many years, working hard to raise money and awareness year-after-year for GLHF and the bleeding disorders community."

Go Fish - Pete Fisher

"We've been walking since the 2014. We walk on behalf of our son who has hemophilia. Our favorite part of the walk is seeing the community come together for a great cause."

Is This Time Billable? - Katrina Thompson

"Our team has walked for three years. Each year our firm enjoys the opportunity to learn more about the organization and how they are making a difference, includuing the personal stories of families visiting Washington, DC to raise awareness for hemophilia and related disease. Hearing the stories of the children and family members who demonstrate such great strength and courage while coping with this disease is truly inspiring! We walk to support all of the individuals and families affected by hemophilia."

GLHF thanks ALL of the individuals and teams who helped make this year's walks a tremendous success! We truly appreciate your time and dedication to this cause.

GLHF Receives Chapter of Excellence Award 

GLHF is the proud recipient of the National Hemophilia Foundation's (NHF) 2017 Partnership Chapter of Excellence Award. The award recognizes our commitment and dedication to improving the lives of people living with bleeding disorders!

Thank you again for helping make GLHF a Chapter of Excellence!

Order Your Holiday Poinsettias and Wreaths Today!

Proceeds from our annual holiday fundraiser provide support for GLHF programs including Camp Klotty Pine, Family Camp, the Wisconsin Bleeding Disorders Conference, scholarships and much more.

Please share this fundraising opportunity with your friends, neighbors, co-workers and others. GLHF offers free delivery for combined orders of $300 or more. For more information about delivery or pick-up options, visit the Decorate for a Cause page.

The last day for orders is Tuesday, November 14. Pick-up and delivery will be December 1.

Apply Now for the National Youth Leadership Institute (NYLI)  

Deadline: October 31
Apply at: www.hemophilia.org/Events-Educational-Programs/NYLI

NYLI is a three-year program within the National Hemophilia Foundation (NHF) designed to assist young adults ages 18-22 from the bleeding disorders community to become well-trained, recognized leaders. NYLI also provides an amazing opportunity for youth to learn and share experiences about living with a bleeding disorder around the country. NHF achieves these outcomes by providing young adults with training, support and opportunities to provide education to the bleeding disorders community. 

Apply at: www.hemophilia.org/Events-Educational-Programs/NYLI 

NHF Article Disease Suppression Pic

And the Survey Says....Carriers, Get Tested!

by Paul Clement
Sponsored by Shire

Women have hemophilia too! Although much progress has been made over the past two decades in getting this message out, public awareness of bleeding disorders among women is dismal. Even women who are known carriers of the gene for hemophilia often don't realize that they can have hemophilia and be at risk of bleeding. Even carriers confirmed to have bleeding problems, and diagnosed as "symptomatic carriers," have run into roadblocks in accessing proper care.

Click here for full story.

INDUSTRY NEWS

Alnylam Reports Patient Death in Fitusiran Clinical Study 

Alnylam Pharmaceuticals, Inc. has reported on the death of a hemophilia A patient who had been participating in a Phase 2 open label extension study for the company's investigational therapy fitusiran which is being developed for patients with hemophilia A and B, both with or without inhibitors.

Click here for full story.

Thank you to this month's underwriters:


A promotional message from Bayer: 


Funds received from underwriting help support GLHF programs and services for the Wisconsin bleeding disorders community.

Great Lakes Hemophilia Foundation does not endorse any product, provider or pharmacy, as we are not medical professionals. We respect that all decisions regarding treatment are between you and your doctor.

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