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Community Voices

Dear Addy: New Treatment Research

May 15, 2018

Dear Addy, How do I approach my doctor with questions on new research about a treatment for my bleeding disorder? There are so many novel treatments under development or newly available! I want to make sure that my doctor considers my input and will work with me to select the treatment that best serves my […]

Dear Addy: Becoming Involved With Committees

May 1, 2018

Dear Addy, I recently participated in a state legislative day and there was a lot of discussion about committees. It’s been years since I took a civics class and I don’t remember much about committees. Could you explain what they are and why they’re important to our advocacy efforts? Signed, Curious About Committees Dear Curious, […]

Infusing Love: Your Spark Is My Why

April 25, 2018

Every year at Symposium, there is some special moment that defines that year’s event for me. As we kick off our 2018 event tomorrow, I’m reflecting back on my favorite memories from the last five years of Symposium: 2013: Frisco, TX (I actually have two favorite memories from this year.)   This picture encapsulates our […]

Dear Addy: Symposium

April 16, 2018

Dear Addy, I’m attending HFA’s Symposium next week and I’d like to gather information about personal and legislative advocacy to bring back to my community. What sessions do you recommend I attend? Signed, Planning Ahead Dear Planner, It’s great to hear you will be attending Symposium in Cleveland! This year, we have expanded our advocacy […]

Infusing Love: My Love/Hate Relationship

April 11, 2018

Some of us love exercise.  Some of us (me!) hate it but love it when you’re done.  What do you find to be the hardest part of exercising? A lot of times it’s finding the time. As moms we’re pulled in a thousand different directions all throughout the day.  Between jobs, kids, and spouses, there is never […]

Dear Addy: Building Relationships

April 2, 2018

Dear Addy, How can I maintain relationships with my legislators after participating in an advocacy day? Signed, Building for the Future Dear Builder, It’s great to hear you are thinking ahead to what’s next! Building relationships with your legislators is an important advocacy strategy and there’s a lot you can do from home and throughout […]

Infusing Love: Plenty to Keep Her Busy

March 28, 2018

When Scarlett was diagnosed with platelet storage pool disorder in 2011 the doctors told me she wouldn’t be able to play most sports. As she went from toddlerhood to adolescence the restrictions seemed endless and it felt like she was never going to find any after school activities that she would enjoy. It was obvious […]

Dear Addy: Op-ed

March 22, 2018

Dear Addy, I’ve heard writing an op-ed for my local newspaper is a good way to spread awareness about bleeding disorders. I’d like to submit a piece during Bleeding Disorders Awareness Month. Can you offer tips for submitting my story? Signed, Ready-to-Write Dear Writer, Writing an op-ed or opinion piece is a great way to […]

Infusing Love: Life’s Little Surprises

March 14, 2018

My family has very quiet about our family history with hemophilia. I was 2 years old when my grandfather passed away, so I knew very little about what he went through or what it meant to be a carrier, other than the result could be having a son with hemophilia. I was excited when we […]

Dear Addy: Bleeding Disorders Awareness Month

March 5, 2018

Dear Addy, I’ve seen HFA’s Facebook posts about Bleeding Disorders Awareness Month. Can you tell me more about it and how I can get involved? Signed, Attentive Advocate Dear Attentive, For more than 30 years, the bleeding disorders community celebrated March as the unofficial Hemophilia Awareness Month. In 2016, this designation become official when the […]

Infusing Love: Talk With Your Children

February 28, 2018

Disclaimer: At HFA, we value all opinions. This blog only reflects only the opinion and experiences of the individual mother/writer. We encourage you to talk with your children about a school safety plan, and have provided a resource at the end of this blog entry. ________________________________________ Around 11 AM, on April 20, 1999, in Littleton, […]

Dear Addy: Bullied for Bruising

February 20, 2018

  Dear Addy, My eleven-year-old son recently shared that he’s being bullied at school because of bruising caused by his bleeding disorder. How can I help him educate his classmates about hemophilia and prevent future bullying? As much as I want to protect my son, I also know that I need to empower him to […]

Infusing Love: Am I a Carrier?

February 14, 2018

Does life ever make sense? Do we really know the answers to why things actually happen? Losing my daughter, Sydney, nine days shy of her second birthday due to SUDC (Sudden Unexplained Death in a Child), pretty much means there is no answer to why. But my family decided to welcome another child into the […]

Dear Addy: Legislative Day Toolkit

February 5, 2018

Dear Addy, I’m participating in an Advocacy Day with my local bleeding disorders organization this month. I have limited experience with legislative advocacy and it’s been a long time since I took a civics class! Could you share insight on what to expect and how to prepare? Signed, Proactive Participant Dear Participant, This is a […]

Infusing Love: Relating to ‘Wonder’

January 24, 2018

When I committed to writing this week’s blog, I had no idea what I would blog about until I went to see the movie ‘Wonder.’ Wonder is about a boy named Auggie who was born with a facial disease called mandibulofacial dystosis, also known as “Treacher Collins syndrome.” Due to Auggie’s medical needs, which require the […]

Dear Addy: Project CALLS 2018

January 19, 2018

Dear Addy, I’m already experiencing problems with my insurance in the new year. Where can I go to report these issues? Signed, New Year, Old Issues Dear New Year, You are not alone. HFA regularly hears from community members with concerns about access to care due to limitations or mandates set by their insurance company. […]

Infusing Love: Ayudando Nuestras Familias

January 16, 2018

Puerto Rico, Isla del encanto, conocida por sus bellas playas, gente amigable y amable, en donde se baila la mejor salsa y se degustan los mejores sabores caribeños. Arropada por el Mar Caribe y el Océano Atlántico. En donde se habla español y es un territorio ligado a Estados Unidos como Estado Libre Asociado y […]

Dear Addy: Accumulator Adjuster Programs

January 8, 2018

Dear Addy, I get assistance with my out-of-pocket costs from the manufacturer of my clotting factor product. My insurer just notified me that it will no longer apply that assistance to my deductible and out-of-pocket maximums! Can they do that? Signed, Distressed Over Deductibles Dear Deductibles, You are running up against a new strategy that […]

Infusing Love: Port to Adulthood

January 3, 2018

I have seen signs for the last few years, but on a cold day just before Christmas, I saw my 14-year-old son not as a little boy, but as a young man. There wasn’t anything extraordinary happening in the moment. He sat at one end of our sectional couch and I was sitting on the […]

Infusing Love: Different Opinions Don’t Mean They Are Wrong

December 27, 2017

“So, he’s still wearing the helmet?” The question, posed by HTC staff at our recent annual visit gave me pause. Yes, my son is almost 5 years old and still wearing his helmet any time his feet are on the floor. I know this is a controversial topic ­ I’ve seen the comment threads on […]

Dear Addy: Public Speaking

December 25, 2017

Dear Addy, I want to participate in a legislative day, but I’m a terrible public speaker. Help! Signed, Nervous Nelly Dear Nervous, You are not alone – many people worry about public speaking! Use these tips to help you become more confident and comfortable speaking during legislative meetings. Hopefully you’ll find this advice beneficial – […]

Infusing Love: In Appreciation of Providers

December 20, 2017

It is safe to say that most of hemophilia has been unexpected. Even when you are planning for the unexpected you get another unexpected in its place, sort of a Murphy’s Law type deal. And yet, I am always finding things about hemophilia that I never expected from our experience. One of the most profound […]

Infusing Love: Through the Smoke

December 13, 2017

It’s been two months since wildfires ripped through Northern California leaving a path of destruction in Sonoma and Napa counties like I’ve never seen before and leaving a scar on all of our hearts. I got to see firsthand the importance of community and was proud to see our bleeding disorder community come together to […]

Dear Addy: Take Action

December 13, 2017

Dear Addy, What is the best way for me to contact my legislators when policy issues affecting the bleeding disorders community arise? Signed, Alert Advocate Dear Advocate, HFA’s Take Action Center has all you need to contact your legislators, including talking points on issues affecting the bleeding disorders community. Watch this short video on using the […]

Infusing Love: The Thief of Joy

December 5, 2017

Some of the best sessions I have attended at conferences have been rap sessions. These sessions bring together certain sub-groups in the bleeding disorder community and allow them to have open conversations, asking questions and sharing information with each other. At one rap session, many years ago, a mom in the parents rap session, was […]

Dear Addy: New Parent

November 27, 2017

Dear Addy, I’m a new mom and my husband and I just learned that our baby has hemophilia A. We are overjoyed at becoming parents and overwhelmed with next steps. Could you offer tips for building a relationship with a hematologist?  Signed, New Mom  Dear Mom, You’ve come to the right place! Knowing where to […]

Infusing Love: A Season of Gratitude

November 22, 2017

I get some pretty stunned responses when I tell family and friends that I am grateful for hemophilia.  They can’t understand how it is possible that I can be thankful that my son, Thomas, has unexpected, ill-timed, and painful bleeds.  How could anyone find good in dealing with a nonsensical insurance company?  Obviously, I could […]

Infusing Love: Big Hearts

November 15, 2017

The past six months have been hard. Like hemophilia was managing us instead of us managing hemophilia. I can’t remember the amount of times I sobbed out of frustration, fear and being powerless to help my son. We are still muddling through and each day is a battle. A battle where it seems like we […]

Dear Addy: ABLE Accounts

November 13, 2017

Dear Addy, Are there ways for my teenage son to save money for college, without endangering his health coverage? My son is currently enrolled in Medicaid under our state’s Katie Beckett program for children with long-term disabilities. Signed, Savvy Saver Dear Saver, Here’s one option you and your son may wish to explore: opening an […]

Infusing Love: Opening Our Hearts & Home

November 9, 2017

When I got married 19 years ago, I never thought I would be a foster parent to over 40 children with special needs. It never occurred to me that I would have the blessing of being a stay-at-home mom for 14 years. I never would have thought I would end up with six forever children […]


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