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Young Adult Podcast Series: Nutrition

October 19, 2017

By offering additional resources and education about the benefits of self-care and exercise for young adults, we hope to inspire a lifetime of healthy choices and habits! Listen in as holistic Nutritionist Jenny Helman offers invaluable tips on how to create and stick to a healthy diet, and dispels common nutrition myths and misconceptions.

Infusing Love: Watching An Advocate Bloom

October 19, 2017

My 11-year-old, Natalie, is not your typical 11-year-old. She is whip smart, savvy, and mature beyond her years. I suppose that comes with being the youngest of three siblings. You have to wise up when your older siblings are trying to pull one over on you since the day you were born. Natalie has recently […]

Infusing Love: Brotherly Bonds

October 11, 2017

It has taken me six years to groom the perfect person to give my youngest son, Laithan, his factor. When Laithan received his port my husband started out being Laithan鈥檚 holder and I could never transition him to the other side of the needle. I don鈥檛 think I wanted him to do it either, since […]

Dear Addy: Sports

September 4, 2017

Dear Addy, My son has hemophilia and loves to play sports. He is going into 6th grade this fall and wants to join the soccer team. How do I set realistic expectations with him and his coach? Signed, Soccer Mom Dear Mom, You are not alone in your concerns 鈥 this is a common question […]

Infusing Love: Siblings Need History Lessons Too

August 30, 2017

  At HFA, we have a core tenant and motto of our organization. It is 鈥淟est We Forget.鈥 In my family鈥檚 view, raising a child with a bleeding disorder in today鈥檚 world means we have the responsibility of determining when and how we help our children to learn and understand the history of our community. […]

Infusing Love: A Back to School Shopping List

August 23, 2017

Buying school supplies prior to the beginning of each school year is a rite of passage. Until my kids got to high school, I was more than happy to take advantage of the school supply kits offered by our school. Even so, each year, I still have to make multiple trips to the store for […]

Infusing Love: The Writing is on The Chalkboard

August 2, 2017

As I walk through the aisles of our local office supply store, I can鈥檛 help but to get a tinge of sadness. The smell of fresh paper, pens, pencils, and crayons are enough for this former teacher to break down right there in the middle of Office Depot. Not that I am unhappy doing what […]

Intern Introspective: That鈥檚 a Wrap for La鈥橞rittinee and Paul

July 28, 2017

Earlier this summer we welcomed our summer policy and government relations interns to our D.C. office. La鈥橞rittinee and Paul are part of the bleeding disorders community and were chosen to participate in a 10-week internship because of their leadership qualities and interest in the field of policy and advocacy. Throughout the summer, La鈥橞rittinee and Paul: […]

Infusing Love: Mama Is Always Right

July 28, 2017

  The early years of my motherhood experience were pretty lonely. We lived across the country from our extended family and I didn鈥檛 know any one in the neighborhood, and frankly, the other moms I did meet weren鈥檛 exactly people I wanted to socialize with. My go-to鈥檚 for parenting advice were books I had bought […]

Dear Addy: PRIDE Project

July 24, 2017

Dear Addy, I have heard of HFA鈥檚 PRIDE Project but am not clear on how I can participate and what I can learn from my participation. As a bleeding disorders community member, what do I need to know about the project and can I really do research? Signed, Researching Research Dear Researcher, You do research […]

Intern Introspective: Plasma Donation Center Tour

July 21, 2017

Nearing the end of their 10-week internship, La鈥橞rittinee and Paul got an opportunity to tour Grifol鈥檚 plasma collection center in Frederick, Maryland. Centers like this collect plasma from donors and then return the red blood cells to the donor in one sitting. The plasma, which undergoes several levels of strict testing, is then pooled and […]

FAQ: Hemophilia Memorial at the National Memorial AIDS Grove

July 12, 2017

  How did the Hemophilia Memorial at the National AIDS Memorial Grove come to be? In 2016, National AIDS Memorial Grove reached out asking for support for their 鈥淪urviving Voices鈥 project. This is a multi-year oral history project meant to ensure that stories and lessons of the AIDS epidemic are captured, curated, and retained for […]

Dear Addy: Hematology Visit

July 10, 2017

Dear Addy, I often become flustered when I visit my hematologist, despite having lots of questions. Can you offer guidance on how to prepare for my visit so I get my questions answered? Signed, Stressed by Appointment Dear Stressed, Any doctor visit can generate a case of nerves. If you have butterflies in your stomach […]

Intern Introspective: A Week in the Life

June 30, 2017

The halfway point of our Policy and Government Relations Internship program is an excellent time for the interns to reflect on the first five weeks of their internship. La鈥橞rittinee and Paul break down what an average week looks like for them as an HFA intern. Paul: After our first action packed week of the internship […]

Bleeding Disorders Organizations Urge Senators to Vote No on Better Care Reconciliation Act

June 29, 2017

  For the past few days, our organizations have been encouraging you to call, tweet and email your Senators to vote No on the Better Care Reconciliation Act (BCRA). 聽On June 27th, Senate Majority Leader Mitch McConnell delayed the Senate vote on the bill but the vote could occur quickly if Leader McConnell is able […]

Infusing Love: As He Climbs On the Bus

June 28, 2017

By now, for most of us another school year has come to an end. For me this usually means complete and utter joy! No more homework, no more early wakes up to catch the bus, no more worrying about clean PE uniforms, and the list goes on and on. Nicholas just finished the 8th grade. […]

Dear Addy: Coverage for New Therapies

June 26, 2017

Dear Addy, I want to switch to a new hemophilia therapy and, though my doctor has prescribed the product, my insurer won’t authorize coverage. How can I get this covered? Signed, Concerned Consumer Dear Consumer, When new therapies come on the market, there is often a lag before health plans add those products to their […]

Dear Addy: History

June 12, 2017

Dear Addy, My daughter has informed me that most people in her generation don’t know anything about AIDS, Hemophilia, or Ryan White. I find this pretty upsetting. How can we educate the next generation about the history of the bleeding disorders community? Sincerely, Old Enough to Remember Dear Remembrance, This is a great question and […]

Bleeding Disorders Advocates Host Patient Fly-In

May 23, 2017

  Washington, DC鈥 Tomorrow, Hemophilia Federation of America (HFA) is hosting a Patient Fly-In and Virtual Hill Day for the bleeding disorders community. As questions surrounding health reform move to the Senate, patients will meet with their Senators, ensuring that their needs are represented. Patients will also participate in a Virtual Hill Day by calling, […]

Infusing Love: Life Imitates Art

May 3, 2017

When ABC premiered, 鈥淪peechless鈥 last fall, I wasn鈥檛 sure if it would meet my expectations. Would it show special needs parenting and family life in a realistic, often sarcastic way, or would it have the feel of an afterschool special? I鈥檓 happy to say it鈥檚 readily become one of a handful of shows we watch […]

Volunteer Spotlight: Geared Up to Health, Wellness & Community

April 28, 2017

The Terry Lamb Health and Wellness Award is award is for exceptional commitment to supporting HFA in its national efforts to encourage health, nutrition and wellness behaviors in the bleeding disorders community. Terry Lamb had severe hemophilia, was an active member of the bleeding disorder community, and was a respected leader. Terry grew up in […]

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 […]

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 […]

Grifols Donates 140 Million Units of Factor on World Hemophilia Day

April 17, 2017

As part of聽World Hemophilia Day celebrations, Grifols has announced a large donation of clotting factor to the World Federation of Hemophilia (WFH) Humanitarian Aid Program.聽This announcement is a continuation of the company鈥檚 three-year commitment from 2014, bringing the total humanitarian aid commitment to more than 200M IU of Factor VIII over eight years Read the […]

Catalyst Biosciences Completes New Hemophilia B Drug Toxicology Study

April 14, 2017

On April 11, Catalyst Biosciences, a clinical-stage biopharmaceutical company focused on developing novel medicines to address hematology indications, reached a key milestone towards starting human trials with聽completion of the CB 2679d/ISU304 toxicology studies. Their press release can be read in full聽here.

Aptevo’s Ixinity Found To Be Safe In Children Under 12 With Hemophilia B

April 14, 2017

Aptevo’s Ixinity, previously approved for use in people over the age of 12, just received approval for use in children under 12, per their ongoing phase 3 trial. Read the full press release here.

Spark Therapeutics Presents Updated Preliminary Data from Hemophilia B Phase 1/2 Trial

April 14, 2017

Spark Therapeutics issued a press release on updated preliminary data from 10 infused participants in the ongoing Phase 1/2 clinical trial of investigational SPK-9001 for hemophilia B. The data is聽being presented at Hemostastis &聽Thrombosis Research Society (HTRS) this week. The press release can be read in full here.

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 […]

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 […]


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