GLHF History

The History of Great Lakes Hemophilia Foundation

1974: GLHF incorporates in Wisconsin (February 22)

 

1976: GLHF signs Charter Chapter with National Hemophilia Foundation (NHF); federal funding initiated for a statewide Hemophilia Treatment Center

 

1978: Wisconsin Hemophilia Home Care Bill becomes law

 

1982: First AIDS patient with hemophilia reported; Wisconsin Block Grant Program funding beings; First Federal Regionalization Application awarded by the Maternal & Child Health Bureau (MCHB)

 

1985: GLHF initiates Resource Development Plan

 

1986: Federal AIDS Risk Reduction Program funding beings - funding originates at the Centers for Disease Control & Prevention (CDC) and is channeled through the Maternal and Child Health Bureau (MCHB) 

 

1990: GLHF hires first Federal Regional Coordinator

 

1991: First GLHF golf outing is held; GLHF established Sickle Cell Program; GLHF sponsors project support grant for statewide assessment of children with special health care needs.

 

1992: GLHF Board of Directors establishes the Jennifer and Robert Hillis Research Fund; GLHF beings the Sharing the Hemophilia AIDS Risk Reduction Experience (SHARE) with Kids Project; Recombinant Factor VIII licensed by the Food and Drug Administration

 

1993: GLHF launches Comprehensive AIDS Risk Reduction and Education Project; GLHF begins the Financial Advocacy, Counseling and Education Services (FACES) project

 

1994: GHLF publishes the Wisconsin Children with Special health Care Needs Statewide Needs Assessment Summary Report concluding project started in 1991; GLHF awarded Wisconsin Maternal and Child Health Bureau Grand for the Wisconsin Hemophilia Treatment Center Network

 

1996: MCHB and CDC separate funding; MCHB funding focuses on maintaining infrastructure and direct service, while the CDC focuses on prevention issues; GLHF initiates First Step Project with Milwaukee and Madison Treatment Centers (HTCs); The Hematology Treatment Center GLHF is transferred to the BloodCenter of Southeastern Wisconsin and renamed the Comprehensive Center for Bleeding Disorders; GLHF holds First Family Retreat, 24 families attend

 

1997: First "GLHF News Brief" newsletter published

 

1998: First meeting of the GLHF Programs and Services Committee; First GLHF Parents Empowering Parents retreat held; the CDC surveillance project, the Universal Data Collection Program, begins national enrollment; FDA approval of the combination of alpha-interferon and ribavirin provides new treatment options for HCV-infected patients. More than 90% of individuals receiving blood products prior to 1985 are infected with Hepatitis C; GLHF awards first Scholarship Program awards; Ricky Ray Hemophilia Relief Act (compassionate pay to those infected with HIV) passes; GLHF works with Wisconsin HTCs to create packet informing consumers about the resources available to them

 

1999: GLHF launches Proving Outreach to Women and Girls through Education and Referral (POWER) in middle schools; NOVO Seven, a recombinant blood factor product that universally induces hemostasis independent of FVII and FIX (extrinsic pathway) is approved by the FDA. This marks a breakthrough for treatment of inhibitor patients; GLHF launches Woman-to-Woman outreach education program whose curriculum, developed by GLHF staff, later serves as a national template; The Wisconsin Maternal and child Health Bureau Grant changes focus, funding only general community health initiatives - thus the State Block grant to the hemophilia program ends

 

2000: NHF on the Road...Last Stop Milwaukee conference held; cooperative conference between NHF and GLHF combining Prevention Program training and the Family Retreat; The long-awaited regulations establishing the process and payment of claims under the Ricky Ray Relief Fund Act published ($75 million available for payment); GLHF renames its quarterly newsletter Headline News (formerly Hemophilia News)

 

2005: GLHF combines the Annual Family Picnic with a Special Event calling it "Walk with the Animals"; GLHF partners with Madison Treatment Center to hold Amish Health Fair

 

2007: First GLHF Wisconsin Statewide Advocacy Training Program held in Madison, WI; GLHF develops Youth Ambassador Program to reach local youth and teach leadership and advocacy skills

 

2008: GLHF partners with the Milwaukee Wave and other nonprofits to provide health outreach to school children at assemblies, school day WAVE games and through a special section in the Milwaukee Journal reach more than 750,000 people.

 

2009: GLHF launches Fit for All - a partnership with NHF and local YMCA's that enabled individuals and their families with bleeding disorders to exercise and maintain a healthy weight to protect their joints; GLHF conducts first Spanish Speaking Education Program; First GLHF walk is held in Madison

 

2010: GLHF Headline News transitions to an online/e-news format; GLHF Education weekend changes its name to the Wisconsin Bleeding Disorders Conference; GLHF hosts its first Hemophilia Walk as part of NHF's national program (replacing Walk with the Animals)

 

2011: GLHF surveillance project, the Universal Data Collection program, ends; GLHF receives NHF Victory for Women grant to target female Facebook users ages 18-24 years old about von Willebrand disease; GLHF Gala becomes new event called Mad Hatter's Reception; GLHF introduces inaugural Family Camp; GLHF creates annual Community Connect magazine

 

2012: GLHF begins providing reimbursement cost for Amish families to attend annual Clinic Day

 

2013: GLHF adds Spanish Speaking Track to Wisconsin Bleeding Disorders Conference; GLHF hosts inaugural Milwaukee's Best Bloody fundraising event

 

2014: GLHF celebrates 40th Anniversary; GLHf establishes Camp Klotty Pine - the first camp in Wisconsin for kids with bleeding disorders - inaugural enrollment is 20 campers

 

2015: GLHF facilitates discussion with WI Medicaid and WI HTCs regarding network and billing for bleeding disorders patients

 

2016: GLHF increases social media presence including FB, Twitter and Instagram to meet GLHF's communication needs; Camp Klotty Pine exceeds goals set in 2013 growing from 20 campers to 37 campers in 2016; GLHF launches mobile website capabilities for better use on phones, tablets and computers