Amber is a mother of four children. Dillinger (11) and Brandston (8) have severe hemophilia A with inhibitors. Dillinger's inhibitor has been tolerized, but Brandston is on his fourth round of Immune Tolerance Therapy. Emma (10) is a symptomatic carrier with factor levels in the 20s. Elise (4) is a carrier with factor levels in the low 50s. Amber has been very active in the hemophilia community and regularly attends the NHF Annual Meeting, Inhibitor Summits, Inhibitor Family Camps and local chapter events. She lives in St. Louis with her fiancée, Mark Kenny, and their children.
Mark KennyMark is a social media strategist and multimedia producer. He lives in St. Louis with Amber Lynn and their four children. Dillinger (11) and Brandston (8) have severe hemophilia A (less than 1% factor VIII) with inhibitors. Dillinger's inhibitor has been tolerized, but Brandston is on his fourth round of Immune Tolerance Therapy. Emma (10) is a symptomatic carrier with factor levels in the 20s. Elise (4) is a carrier with factor levels in the low 50s.
Ryan is 43 years old and has moderate-severe hemophilia A. He became a Licensed Practical Nurse after working in the IT support industry for 20 years. Ryan is now retired from nursing and is very active in the hemophilia community through social media. In 2011, his HemoHijinks blog attracted nearly 10,000 readers and he currently authors Infuzed for HemAware, a national bleeding disorders magazine. Ryan lives in western New York with his husband Jarrod and their two dogs, Max and Savannah, and two cats, Roux and Radar.
Dillinger is a 10-year-old boy with severe hemophilia A and an inhibitor that has been tolerized, but he still receives factor VIII infusions every other day. When Dillinger was seven years old he began infusing himself regularly without assistance. He attends several hemophilia camps each year, including Inhibitor Family Camp. Dillinger loves to read, swim and play soccer. He was featured in a hemophilia public service announcement, which can be viewed on the Videos page of this website. Dillinger lives in St. Louis with his parents and siblings.
Brandston is a 7-year-old boy with severe hemophilia A and an inhibitor. He is currently on a very aggressive Immune Tolerance Therapy program that requires daily infusions. Brandston can mix his own factor and has infused himself several times. He attends several hemophilia camps each year, including Inhibitor Family Camp. Brandston is very active despite his inhibitor. He has played soccer competitively and loves to swim. Brandston was featured in the video My Life with Hemophilia published on HemAware. He lives in St. Louis with his parents and siblings.
Patrick is a native New Yorker, an NBA fanatic and big fan of other people's dogs. He's also a severe hemophiliac, so he's been given permission to write here (and in 3rd person no less!). For a few years Patrick worked as a professional actor, but in 2010 he left acting to play poker full-time. He made a few bucks & traveled some, but when online poker was banned, he returned to the creative world. He's currently working in event planning, producing & hosting The MyNY Podcast, and developing a comedic web series about a goofball hemophiliac called STOP THE BLEEDING!.
Mahalingam is a 22-year old self-declared programmer living in God's Own Country - Kerala, India. Holding a technical degree, and pursuing a post-graduate degree, he took up programming as a way to get around severe hemophilia A. He sharpens his skills through project development (which makes him forget the pain inflicted by the disorder born with him). He now leads the Youth Group of Hemophilia Society Cochin Chapter. He lives in Cochin, Kerala with his parents, and blogs about his life, harnessing the power of social networks to create awareness about hemophilia.
Sara is a thirtysomething stay-at-home-mom. She lives in the Tampa Bay area with her husband Michael, sons Noah (13) and Evan (4), and Boston Terriers Cletus and Skeets. Evan has severe hemophilia A and is the first in the family with the disorder, though Sara is a carrier by mutation. Sara works very closely with her local chapter and hopes to inspire others to become involved in the community in as many ways as they possibly can. Sara earned a BS in Accounting in 2002, left the field to teach middle school math, and has recently returned to school to pursue a career as an RN.
Luke is a graduate of University of Nebraska - Kearney with a BS in Organizational Communication and of University of the Pacific with an MA in Higher Education Administration. He is a full-time husband to his beautiful wife and father of their son. Luke has moderate-mild hemophilia A. He has many relatives affected, as well. Lucky to infuse as needed, Luke was able to participate in many things uncommon for people with hemophilia, some approved by the HTC and others not (hockey goalie for one). Luke also enjoys photography, killing noobs and traveling.
Brad has severe hemophilia A and is determined to not allow his diagnosis to control his life. After graduating as valedictorian of his high school, Brad received a Bachelor's degree in History from the University of Virginia and a Master’s degree from the Liberty University School of Business in Management and Leadership. Brad is an avid golfer and sports enthusiast. He currently works as a marketer and is transitioning to the operational side of healthcare. When he is not working or playing golf, you can find Brad spending time with his wife, Sarah, and yellow lab, Brody.
Jennifer is a 36-year-old mother of a beautiful son born in 2010. Her son, Tommy, has severe hemophilia A with an inhibitor. Tommy is Jennifer’s, and her family’s, first introduction to a bleeding disorder, as there are no known family members with this disorder. As they begin the Immune Tolerance Therapy process, she has found her own form of therapy by writing about their experiences on www.tommycameron.net.
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