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Community Voices

Infusing Love: Changes

April 28, 2017

As parents of a nearly twenty five year old son, my husband George and I have enough to write a book about being the parents of a child with severe hemophilia B. There are so many ups and downs raising Michael over the years. Our most recent up and down has been the transition of […]

Volunteer Spotlight: A Community Builder

April 27, 2017

Each year, at the HFA Symposium, we recognize the tremendous volunteerism in the bleeding disorders community. The Michael Davon Community Service award is for extraordinary service to the community via one鈥檚 national or global volunteerism and charitable giving. Michael Davon was a New Englander who was integral to the inception of HFA. He was described […]

Volunteer Spotlight: Blood Brothers & Tireless Advocates

April 25, 2017

The bleeding disorders community has been built on the tireless advocacy work of volunteers. Today, we recognize two gentlemen and Blood Brothers who were mentors, friends, and inspiring advocates. We were honored to recognize Ellis Sulser and John Reed during our recent Symposium. The Ron Niederman Humanitarian Award recognizes extraordinary and inspirational service to the […]

Volunteer Spotlight: No Brighter Star

April 24, 2017

Each year, the HFA staff recognizes the national spirit and remarkable volunteerism for HFA with the #bleedingdisorders community. As #VolunteerAppreciationMonth comes to a close this week, we will be recognizing award winners from #HFA2017. Today, we remember Star Tyree, a long-time HFA supporter, volunteer, and friend.   Starlyn (Star) Tyree was a former Executive Director […]

Volunteer Spotlight: Award Winner Unites Community

April 21, 2017

In conjunction with Volunteer Appreciation Month, we are highlighting volunteers who help to make the bleeding disorders community inclusive and informative. Today, we are proud to recognize one of our recent award winners at our 2017 Symposium, Darcy Zwier! The “It Takes a Village”聽award is provided to an individual who goes above and beyond in […]

Infusing Love: Virtual Hugs

April 19, 2017

  I need to send a big hug and thank you to all the bleeder moms who have supported me. I thank you for the endless support you continue to give me. But I especially need to send a special hug to the one mom who has been there to pick me up these last […]

Dear Addy: HFA Community Research Portal

April 18, 2017

Dear Addy, What is the HFA Community Research Portal and why is it important to me? Sincerely, Research Meets Advocacy Dear Research, The HFA Community Research Portal is an exciting new research project that will provide individuals with bleeding disorders the chance to directly engage in meaningful research projects. The HFA Community Research Portal is […]

Bioverativ Strengthens Commitment To Women With Bleeding Disorders

April 17, 2017

Bioverativ聽joins the global hemophilia community in recognizing World Hemophilia Day and supporting the millions of women and girls impacted by bleeding disorders through this year鈥檚 theme, 鈥淗ear Their Voices.鈥 Excerpted from the press release: 鈥淏ioverativ shares the World Federation of Hemophilia鈥檚 commitment to understanding the needs of all members of the bleeding disorders community, including […]

Infusing Love: A Letter to A Mentor

April 12, 2017

  Dear Corey, Max was 2 or 3 years old when I first met you. I had been told about this conference happening in Sturbridge, Massachusetts. I really didn鈥檛 even know what it was for, but at that point I was desperate to be connected with anyone who had hemophilia. It was a little shocking […]

A Patient鈥檚 Perspective on a Fresh Osteoarticular Allograft

April 11, 2017

By: Christopher Quesenberry Having a rare condition like hemophilia has never held me back from pursuing an active lifestyle. The demands of maintaining a high level of activity, however, ultimately resulted in joint failure. My right knee has been considered a 鈥渢arget joint鈥 since I was in the fifth grade. By the time I reached […]

Dear Addy: Share Your Story

April 2, 2017

Dear Addy, I’ve been following the news about the Affordable Care Act. What else can the bleeding disorders community do to ensure access to quality health care? Signed, Energized Advocate Dear Energized, Advocacy is most successful when people share their personal story about how legislation affects them. Across political parties, Americans are reaching out to […]

Infusing Love: Radical Change

March 29, 2017

  When my son Thomas came into the world, he radically changed my knowledge base about hemophilia and other bleeding disorders. As this March comes to an end, I鈥檝e been thinking about how far we鈥檝e come as a family since Thomas鈥檚 diagnosis. I decided to look for the original email we sent to friends and […]

Infusing Love: This Is Us

March 22, 2017

  My mighty warrior, Caeleb, still has an inhibitor. His Bethesda Unit (BU) is less than one and his half-life is less than four hours, so we have a ways to go. His BU has reached zero a few times, and I was thrilled! It was a victory, and when you live with an inhibitor […]

Infusing Love: 隆S茅 agradecido!

March 15, 2017

No importa en la circunstancia en que nos encontremos siempre tenemos una raz贸n por la cual estar agradecidos.聽聽 A lo largo de mi carrera como maestra de escuela elemental por m谩s de 15 a帽os y ahora como coordinadora de programas en HFA, he tenido la oportunidad de conocer a muchas personas. Maravillosas personas con caracter铆sticas […]

Dear Addy: Advocacy Committee

March 6, 2017

Dear Addy, I really want to help my local organization grow its advocacy efforts by starting a committee. However, I’m overwhelmed by the process. Where should I start, and how do I maintain an advocacy committee? Signed, Committee Quandary Dear Quandary, Creating or joining an advocacy committee is a great role if you are interested […]

Infusing Love: We Are Family

March 1, 2017

  Since my son Thomas was born thirteen years ago, I鈥檝e come to think of the bleeding disorders community as family. Relatively speaking, that feeling came to us very quickly after meeting people in the community. My husband and I jumped right into attending events, volunteering, and generally asking questions of medical providers and anyone […]

Infusing Love: Laugh or Cry

February 23, 2017

Anyone who knows me or has read any of my previous blogs, knows that our household basically revolves around baseball. If the weather is nice and I鈥檓 not at work, I鈥檓 at the baseball field. Sometimes it makes life a little crazy, but it makes Nick really happy and that is what鈥檚 most important. My […]

Dear Addy: Social Media

February 20, 2017

Dear Addy, I often hear about using social media to engage policymakers and spread awareness to friends. Does this really work? How can I advocate on social media without being annoying or preachy? Signed, Social Media Maven Dear Maven, Social media can be an excellent platform to raise awareness for an issue or cause you […]

Infusing Love: Six Lessons Learned

February 15, 2017

  A lot has changed since my daughter was diagnosed with a platelet storage pool deficiency in 2011. Initially, there was little information and case studies to look to for reassurance. Not having a treatment plan led to many fears, doubts, and unknowns and wondering if I could make it through another injury or trip […]

Infusing Love: The Right Time

February 8, 2017

聽 There is this one conversation I鈥檝e had repeatedly with dozens of parents over the past ten years. It always revolves around our desire to be protective and shelter our kids. A child鈥檚 early years should feel safe. However, we know they cannot stay innocent forever. We do want them to grow up to be […]

Dear Addy: Out-of-Pocket Expenses

February 6, 2017

  Dear Addy, I just got my daughter’s January EOB, and I realized that my family is now responsible for up to $14,300 in out-of-pocket (OOP) expenses. Why did this amount go up $600, even though we kept our same insurance? And how can I afford this?!? HELP! Signed, Anxious about OOPs Dear Anxious, High […]

Infusing Love: Bleeds Hurt

February 1, 2017

  A couple of months ago, my 8th grade son with hemophilia had 鈥淔uture Bruin鈥 night at the high school he will be attending next year. Any time we have to think about making a school move with him it induces anxiety for me as I start thinking about the process we鈥檒l have to go […]

Millennials Get Busy- Advocacy for Young Adults

January 26, 2017

By Sarah Shinkman Learning how to advocate is an important life skill at any age. Whether you are practicing personal, peer, or group advocacy, you have the power to influence decisions that may affect you and others. HFA鈥檚 final Young Adult Hangout of 2016 featured two community advocates and a health insurance overview by Erin […]

Infusing Love: I鈥檒l Be Ready

January 25, 2017

Every day, I am reminded of how quickly time passes. My kids will only be little for a very short period of time. As working parents, we always tend to wish the days away in order to get to the weekends when we can take a deep breath, relax, and prep for another busy week […]

Dear Addy: Self-care

January 23, 2017

Dear Addy, With the holidays behind us, I鈥檓 trying to focus on taking care of myself in the new year. However, I struggle to do this between family, work, and social obligations. Can you provide some tips on self-care so I can be a better advocate for myself and my family? Signed, Stressed Out Dear […]

Infusing Love: Now What?

January 18, 2017

聽 This week the Infusing Love Mom鈥檚 Blog will tackle a touchy subject: What happens to health care in 2017? Is there a replacement for the ACA that will offer support and protections? Whether your politics lay left, right, or center, as a community, we all live with having bleeding disorders in our lives and […]

Infusing Love: Single But Not Alone

January 11, 2017

Being a single parent is challenging for anyone. Being the single parent of a child with a severe, costly chronic illness comes with its own set of issues. I remember the times that Max unable to attend events that were geared toward fathers and sons. I once called our chapter office when Max was around […]

Dear Addy: Workplace Disclosure

January 9, 2017

Dear Addy, I just accepted my dream job, and I can’t wait to get started. Unlike my last job, however, no one knows I have a bleeding disorder. When should I approach my new employer with this, and how much should I share? Sincerely, New Job Jitters Dear New Job, You only need to disclose […]

How I Cope With Pain

January 5, 2017

Note:聽This article is for educational purposes only and is not intended to be construed as direct medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers. Pain is a serious medical concern in our country. Approximately […]

Infusing Love: Smells and Sounds

January 4, 2017

The senses of sound聽and smell are very powerful. Sometimes a smell can spark a memory of a wonderful meal simmering on a stove or the smell of the air from a perfect breeze on a spring day can transport us back. The sounds of elevators dinging as people anxiously wait their turn and the sliding […]


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