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Community Voices

Terry Lamb

July 2, 2011

Terry talks about growing up with hemophilia and how staying active has helped him live a wonderful life!

John Jarratt In Action

June 21, 2011

John Jarratt speaks to a group about growing up with hemophilia. This is a longer piece, so grab a cup of coffee and we promise you will gain some perspective from John’s wisdom!

Kelly Champagne

June 17, 2011

[vimeo]http://vimeo.com/24180913[/vimeo]

A Woman’s Story

June 7, 2011

Click here for Lew Collins Story Thank you to Lew Collins and Matrix Health for sharing this story with HFA!

Our Journey: The Landseadel Family

May 5, 2011

Anna and Matt have adopted several children, two who have hemophilia. Anna and Matt try to normalize hemophilia as much as they can and realize that Chris and Xander don’t know anything different.

Kyle & Jesse: A Young Perspective

April 23, 2011

Kyle and Jesse are two boys who live with hemophilia. These two youngsters are showing a great example to their peers about the importance of advocacy!

Reid Coleman, A Committed Advocate

March 19, 2011

Reid talks about growing up with hemophilia and the importance of education, self advocacy and social media advocacy.

A Mother’s Perpective

March 11, 2011

Pam Smith talks with her heart about raising a son with hemophilia.

Women and Bleeding Disorders

March 11, 2011

This video features Sal Livolsi & Linda Wyman-Collins; helping women with bleeding disorders is close to both of these community members hearts. Sal has a wife and son with hemophilia and Lew talks from personal experience of having a bleeding disorder.

A Better Life

February 11, 2011

Tony and Janya Roland have a 4 year old son with hemophilia. Jayna grew up with a father who hid his hemophilia and does not want her son to be forced to do the same.

The Browns

January 7, 2011

As a new mother, Bert Brown was filled with joy, excitement, hope, and the wonderment of this miraculous experience. Imagine then, as you are recovering, being told by your doctor that the precious baby you just delivered several hours ago has hemophilia, a genetic bleeding disorder.聽 Your world has turned upside down and your thoughts […]

Von Willebrand Disease: A Family Affair

October 28, 2010

This Voices video from 2010 features the Cieri family from Florida, who all have von Willebrand Disease.聽Each member of the family describes what living with a bleeding disorder is like, the challenges they face, and how it’s helped to make them closer as a family.

Michael Bishop — You Are Not Alone

September 28, 2010

By Michael George Bishop My name is Michael George Bishop and I have Hemophilia B with inhibitors. I decided to share my story with the Hemophilia Federation of America (HFA) and “Voices” because I wanted other kids like me, with hemophilia -and those in physical or emotional pain – to know they are not alone […]

My Camp Family

July 23, 2010

Rocky believes that having hemophilia has provided him with many opportunities and credits his camp family for showing him the right path.

Let Him Go, Let Him Grow

July 22, 2010

Dennis and Denise have a teenage son with hemophilia, they encourage their son to focus on school because he needs to find a stable job with good insurance.

Helping Out a Friend

July 21, 2010

Pam helped Ann through the diagnosis of her son’s bleeding disorder.

Friendship Through Tough Times

July 8, 2010

Jill & Kathy have supported each other through the toughest of times.

A Mother’s Story

July 6, 2010

Living Life to its Fullest

June 29, 2010

Sean and Lesa talk about their family life and living with a bleeding disorder.

Growing Up Different

June 22, 2010

Jim, Gio, and Tim talk about their life as young boys with hemophilia.

Roger the Cactus Farmer

June 11, 2010

Roger, a 67 year old with hemophilia is full of wisdom and life experiences.

Dads In Action

June 7, 2010

The HFA offers the Dads in Action Program as an educational and social support system designed to provide Dads with a sense of belonging as well as keys to strengthen the family unit.聽 The program focuses on building strong family ties within the context of having a bleeding disorder.聽 Program participants include both fathers of […]

The Murry Family

April 21, 2010

A Tennessee couple talks about raising their 3 children and juggling their life with hemophilia.

Amy Maeder

December 22, 2009

Amy Maeder is a mother of two teenagers with severe hemophilia.聽 Amy is very passionate about improving the lives of her sons and the bleeding disorders community.

Any Port in a Storm

December 19, 2009

The Cleghorn family shares their story of having a young child with hemophilia.聽 They talk about prophylaxis treatment and transitioning from a portacath to to a vein.

Barry, a True Blood Brother

December 1, 2009

Barry has hemophilia, HIV, and hepatitis C. 聽He discusses the realities of being diagnosed HIV positive as a teenager and the many challenges he has faced throughout his life. 聽Barry hopes by sharing his story he will empower others to share theirs.

Derick Stace-Naughton

October 22, 2009

[vimeo]http://vimeo.com/7055318[/vimeo] Derick Stace-Naughton, a young man with von Willebrand’s Disease, started the group “Students for the Awareness of Bleeding Disorders.” 聽Derick wants YOU to urge your member of congress to co-sponsor H.Con Res.147. 聽H.Con.Res.147 promotes screening for vWD.

John Jarratt

October 20, 2009

“One Man’s Story” By John Jarratt, M. Ed., L.P.C. Download John’s Story It is my hope that the new millennium will bring about a better understanding of hemophilia and bleeding disorders, along with an improved relationship and collaboration with consumers, chapters, foundations, hemophilia treatment centers, clinics, private practitioners, emergency room personnel, national organizations, and industry. […]

Laveane

October 20, 2009

By Laveane Lovelady, Damascus, AR Download Laveane’s Story This story is about me, but it all started when my son Ryan was born August 15, 1989. It was after his birth when I was finally diagnosed with mild Hemophilia A, because he was diagnosed with severe Hemophilia A. My blood pressure had gotten dangerously high […]

Barry

October 20, 2009

The Long Mile by Barry Haarde Download Barry’s Story There was only one more hill to climb as I rounded the corner that brought the finish line into view. I had ridden my bicycle 175 miles since lining up at the starting point back in Houston the day before. After more than 10 hours on […]


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