Laurie Kelley

Catch Their Eye: Visuals Matter!

Laurie Kelley March 8, 2026

Almost all humans, regardless of culture or literacy level, absorb information best when it’s presented visually. Advertisers know this well: they want us to buy what they’re selling, so they must grab our attention quickly using colorful, creative, emotional images that persuade us to act immediately. This is even more important currently, given how quickly people scroll and are bombarded with ads and shows.

Visuals can include posters, memes, slides and photos.

When does the bleeding disorder community use visuals? Well, it’s March—Hemophilia Awareness Month, now referred to as Bleeding Disorders Awareness Month. You might be trying to get people’s attention to educate them about hemophilia, in order to secure donations, or to advocate for better health care. Visuals get attention: they can help educate. But mostly, they can or should generate emotions. You need to decide what emotions you want to generate with your visual.

Here are a few tips for creating effective visuals:

Photos: Be sure to capture life and movement—children are always captivating—and varying camera angles. Avoid long-distance shots. Place photos in several locations on the page, or angled to create interest. Don’t overdo it! Graphics can be fun, but may clutter the page. The more photos, the less effective they are. Keep them to a minimum so your readers can easily absorb your information.

Color: Certain emotions can be associated with certain colors. Red is the color universally used in the bleeding disorder community for obvious reasons. But look at these and ask: what emotions do I want felt when people look at my visual?

Red: power, danger, intensity, life, impulsiveness, blood, passion, speed

Orange: power, energy, fire, warmth, cheerfulness

Blue: calm, peace, tradition, spirituality, water

Green: growth, health, money, balance, quiet, nature, environment

Black: power, authority, mystery, evil, death

Gray: elegant, established, classic, mature, intelligent

Yellow: wisdom, warmth, cheerfulness, idealism, caution, energy, speed

Brown: earthy, basic, simple, plain, natural

White: pure, peaceful, cold, clean, honest

Purple: royal, valuable, ceremonial, traditional

Typeface: Even though you may be designing a visual, you may use some words. Typeface refers to a distinct design of characters and symbols, and fonts, like Arial or Times New Roman. Typeface is available in different weights and styles. Weight refers to the thickness of lines used to form the letters; heavier weights are thicker and look darker. Style or font refers to a variation in the basic design, like bold or italic. Make sure the typeface you choose is readable— avoid fancy italics or script. Choose one that produces the positive associations that contribute to your message in the visual.

Look at the great visuals below, and ask yourself: What do I feel when I view each one? Which ones am I drawn to, and why? Which are most effective for educating, and why?

Good luck creating your visual for Hemophilia Awareness Month, and maybe in April for World Hemophilia Day on April 17!

Music: Something That Outlives It All

Laurie Kelley February 22, 2026

I’ve always loved music. I was raised with classical, took piano lessons for years and later discovered rock (the best years, 70s!), then Disco in college (I was a Disco Queen!), then Disney Tunes when I raised children, then David Bowie, Queen, Metallica, Disturbed and back to the basics: The Who, Stones, Doors, and threw in some fun stadium rock like AC/DC and Guns N’ Roses.

I love to know about musicians in our hemophilia community, of which there are quite a few! But one is right in our neck of the country. Francis Beaudoin contacted me to donate factor, and somehow we chatted about music. He lives here in New England; in fact, his mother was once president of the New England Hemophilia Association.

Then he sent me links to some of his songs. I was drawn in by the lyrics: they are powerful, clear, and so heartfelt. There are songs about overcoming hemophilia, but also about the political landscape today. Such talent, both in songwriting and in lyrics. He writes from what he knows: pain, limitations, learning to treasure the important things, and overcoming heardship. With his permission, I wanted to share his work with our community.

Francis writes: “I was born with severe hemophilia, and it has shaped the course of my life in ways both visible and invisible. There were many limitations placed on what I could do physically and professionally. I was not able to build financial wealth to leave behind for my family. But I realized I could leave something else. I could leave this archive [of music].

“This collection exists as a legacy for my wife and my children. It is something they can return to long after I am gone. It is a record of my thoughts, my emotions, my struggles, and my strength. It is a way for them to know who I was, not just through memory, but through my own words.

“If someone reads or listens to this archive decades from now, I hope they feel something real. I hope it reminds them of their own life. I hope they see that even though I lived with disability, and even though I faced many emotional and physical challenges, I endured. I adapted. I continued forward.

“I was not a quitter. This archive is proof of that.

“It is also a reminder to myself and to anyone who encounters it: never deny who you are, and always strive to become better than you were yesterday. God had faith in me. Because of that, I learned to have faith in myself.”

Like his lyrics, which can reflect gentle emotions that run deep, his music too can start soft, with a guitar and excellent singer, but swell louder and more powerful as drums and other instruments join in. This is music to connect to, through shared experiences in hemophilia, but also through feelings that we all have in this time of uncertainty in the United States. With that, the song I really love is “Unity: We All Belong.”

Please check out Francis’s songs, listen to them, see what speaks to you, and which songs you feel most connected to. There is always an element of hope and overcoming in them, like the lyrics here from the song “Anatomy”:

I am more than bone and fracture,

More than time’s slow capture,

Cells may fade and parts may fall,

But something in me outlives it all.

Francis’s music will certainly live on, as all music does.

Check out Francis’s music on YouTube:

You can search for Francis Beaudoin’s music on Apple Music, iHeart Radio, Spotify, Amazon Music and YouTube Music.

The Importance of Access to Mental Health and Substance Treatment

Laurie Kelley February 8, 2026

In the 1980s and 90s, the focus of the bleeding disorder community was safer products, then more effective products, then prophylaxis. Mental health and substance abuse was not high on the radar, if at all.

While we enjoyed knowing that our children’s joints were protected and they could now not miss school and could play sports, a few people in the community realized that there were serious mental health issues to address as well.

One of these people was mom Kate Bazinsky, and in 2022, she helped to found the Bleeding Disorder Substance Use and Mental Health Access Coalition (BD SUMHAC). Their urgent question was: Why are people with bleeding disorders being denied access to inpatient and residential mental health and substance use treatment?

In the BD SUMHAC’s latest newsletter, she writes: “At first, we assumed the answer would be found in federal or state regulations. But through years of advocacy, policy analysis, and real-world casework, we learned something different and far more complicated.

Despite the fact that people with bleeding disorders are protected under federal disability laws, including the Americans with Disabilities Act and Section 504 of the Rehabilitation Act, which prohibit discrimination on the basis of disability, there were barriers to access to care.

Kate writes: “Behavioral health facilities are granted significant discretion in determining whether they can safely meet an individual’s medical needs. When a facility claims that a person’s bleeding disorder is “too medically complex” to manage, the denial is often framed not as discrimination, but as a safety concern. Too often, these decisions are made without a true understanding of what it takes to manage a bleeding disorder

“Fear, unfamiliarity, stigma, and misunderstanding remain far too common.

“BD SUMHAC has made important progress on the policy front. We helped strengthen Section 504 regulations to require individualized assessments, worked with the American Society of Addiction Medicine to clarify in its Fourth Edition Criteria that people who require infusion medication do not automatically require the highest level of care, and supported MASAC recommendations affirming that people with stable, well-managed bleeding disorders should not be excluded from inpatient or residential mental health or substance use treatment.

“These wins matter. But they are not enough.

“We now know that policy alone will not solve this access problem. Real change requires equipping community members and providers with the knowledge, tools, and confidence to educate facilities, advocate during referrals, and respond effectively to denials.

“As we look ahead, our focus is shifting toward education, empowerment, individual advocacy, and sustainability. This means helping people engage their treatment teams early, often, and honestly, and ensuring they are prepared long before a crisis occurs.”

I think all of us in the community know someone with mental health issues. I know of too many young men with hemophilia who have committed suicide. It’s heart-breaking. But there is a huge movement to address these issues, not only at the personal level with HTC staff, but at the policy level, to change the system. That’s what BD SUMHAC is all about.

I urge everyone to receive their newsletter, to keep abreast of policy decisions that could impact each of us. And join their cause if you can. They are doing great work, and important work.

Sign up here: www.bdsumhac.org

Good News from CSL Behring

Laurie Kelley January 25, 2026

Here’s some good nes to kick off the new year; just in from CSL Behring:

“We are pleased to announce an important update to the IDELVION Connect Copay Program.* In recognition of the ongoing needs of the patient community and our commitment to providing meaningful support, we are increasing the maximum eligible out-of-pocket copay assistance from $12,000 to $20,000 per patient. To enroll, patients and Specialty Pharmacies are encouraged to contact IDELVION Connect at 1-800-676-4266.

“What is Changing

  • Effective, January 1, 2026, CSL has increased the out-of-pocket IDELVION copay coverage up to $20,000 per year for each eligible patient.

“What is Not Changing

  • IDELVION Copay Support Program helps eligible patients with commercial insurance by assisting with out-of-pocket expenses for IDELVION. Most patients with commercial insurance pay $0 out-of-pocket.
  • Both patients and Specialty Pharmacies can contact IDELVION Connect at 1-800-676-4266 to inquire and/or process a copay coverage request.
  • If a claim is disputed for any reason, the Specialty Pharmacy is responsible for contacting IDELVION Connect at 1-800-676-4266

“If you have questions, feel free to contact IDELVION Connect at 1-800-676-4266.”

Making Maximum Impact!

Laurie Kelley January 11, 2026

I’ve been donating factor to developing countries since 1996 informally. Then in 2002, I founded Project SHARE to make it a formal part of my company, with a director and staff. Then, in 2019, I gifted that program to Save One Life, the nonprofit I founded, and started my own program—Maximum Impact. The idea is this this: simplified donating. No overhead, no employees, no fundraising. I extended my factor donations to include funding for home repairs, medical testing, school fees, surgeries and prosthetics. It gives maximum impact. Boom— me to them.

It might be impossible to know how many lives we have saved or improved over the decades, but I do have some data. This year was my best year ever for donating factor. Ready?

7,940,699 IU of factor VIII, factor IX, FEIBA and VWF donated overseas, worth at least $16 million. And let’s include the 4101 mg Hemlibra and 756 mg bypassing agents for a grand total of over $18.5 million.

It’s donated free of charge. We pay for shipping and any customs fees and wire fees.

The lucky recipients live in many countries. This year these include:

Bangladesh, Barbados, Bolivia, Cambodia, Dominican Republic, Egypt, India, Madagascar, Mexico, Pakistan, Philippines, St. Lucia, St. Vincent and the Grenadines,  United Arab Emirates, Vietnam, and Zimbabwe. Visit here to download our successes-to-date chart!

Our factor is donated to us from individuals, HTCs, hemophilia nonprofits, and specialty pharmacies. Often people have switched factor brands or have had unhappy experiences with their prescribed drug.

Our recipients are typically people I know and trust from decades of work in the international bleeding disorder community. They work for their national or local communities. In other words, they are well vetted.

While I try to help as many as I can, there are limits. We are limited by our donations, and by access to countries. Some countries have too many obstacles that put the donated factor at risk of confiscation or delay. I’m sorry for those patients who are unable to receive our donations.

I’m deeply grateful to everyone who has donated their unwanted and unneeded factor. And so are our recipient patients!

We look forward in 2026 to providing more factor, and funds for school fees, medical costs, and prosthetics for those who live in countries where access to these are limited or unavailable.

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