NHF

NHF’s New Name, Logo and Brand

Laurie Kelley August 20, 2023

There was an exciting development at the national bleeding disorder conference in Maryland this past week. This is the largest gathering of our community in the US, and some exciting news was announced. The National Hemophilia Foundation (NHF) has changed its name, after 75 years. Along with that, it also has a new logo.

But why? And why now?

Branding

Branding a cattle for identification

All personalities, companies and organizations need an identity that the public recognizes and that creates positive associations. With bleeding disorders, this identity includes most likely humanitarianism, proactive behavior, and medical progress.

Identity is reinforced through marketing materials—a logo, business cards, website, and stationery, which all symbolize and define. This is called branding. Branding is what farmers, cattle owners and cowboys do to their livestock and horses, in case they get lost (or stolen). A special marking is burned into the hide of the animal that easily identifies the ranch or individual owner.

For companies, the “brand” is not burned into the hide! It’s a logo—this is a design, a visual symbol that represents the organization’s identity, character, focus, and sometimes culture. Much like the colors and symbols of each country’s flag, the colors, shape and symbols of a logo say clearly who and what the company or organization is.

A logo is one of the main components of branding and should be created after the mission and vision are created. NHF already had a logo, in use for decades. It was replicated around the world too, with the World Federation of Hemophilia, and various chapters and other countries. The logo, in various forms, showed the outline of a human, white inside, leaning on the figure of a person, with red inside. Clearly, people without factor leaning on a person with factor. Over time, the board of NHF decided this was a bit negative, and changed the logo to two upright figures, one white and one read, with arms about one another. Supporting but not dependent.

Brands Evoke Emotions

And the reason for that change is emotional connotation. What emotions did the leaning, white figure conjure up? Weakness? Dependency?

An effective logo elicits an emotional response that creates positive associations. Footwear manufacturer Nike uses a simple “swoosh” design that is contemporary, upbeat, and active, implying energy and speed. The logo of the United Nations depicts olive branches, a sign of peace, embracing the earth.

Even with the positive connotations of the two figures being equal and embracing, NHF decided that this too was outdated. And logos can be updated to reflect changing sentiments and beliefs. Time for a change!

Inclusivity, Welcoming

The new logo is interesting, and reflects changes in the mission of NHF. NHF is no longer just about hemophilia. It is now the National Bleeding Disorders Foundation (NBDF). This title infers inclusivity, which is not only a catchword and movement in society today, but has vital ramifications for our community. NHF implies (and states) hemophilia. NBDF implies and states: hemophilia, rarer bleeding disorders, von Willebrand disease, women with hemophilia, and more.

The new logo reflects this. It has changed from two figures, which is a concrete representation, to the more abstract circle of blood drops. This reflects a more graphic representation of our community. More beautiful is the decision to make the blood drops a palette of colors. To me, this represents diversity, also a catchword and movement in society. Inclusive of ethnicity, gender fluidity, language, heritage, and more.

In logo creation, circles are more fluid than squares; circles are softer, used to represent continuity and eternity, and in general more pleasing to the eye than angular shapes like triangles and squares.

This simple logo with multiple colors is a great choice and can more easily be used in marketing in dozens of ways. By the way, NBDF’s new tagline is a slight variation of one I’ve been using for about 20 years, Mine is Education, Innovation, Compassion.

Change is hard for many to accept. Let’s see how the community reacts to this name change and new logo. I hope it is as positive as the new logo feels to me.

The Age of Gene Therapy: Why Plasma?

Laurie Kelley December 4, 2022

It’s happened: gene therapy is available, at least for hemophilia B patients in the US. The idea that hemophilia can be treated as a “cure,” or at least using one shot to cover your bleeding episodes for at least a few years, is tantalizing. And if not that, we still have recombinant products that have never touched human blood.

We just updated our factor chart here, which compares all the products available on the market for hemophilia A and B. You have lots of treatments to consider! But why are we still making plasma-derived products?

A few reasons. But first, understand where plasma-derived products come from.

Plasma-derived products come from human blood plasma. Plasma donors undergo strict screening for disease risk factors, and their plasma is tested for several viral diseases. Recombinant products are not derived from blood; they originate from genetically engineered mammalian cells containing the human gene for factor. Recombinants are produced in large bioreactors, with human and animal proteins used in the culture medium in first- and second-generation recombinant factor. Third-generation products contain no human or animal proteins in the culture medium or the final product. Fourth-generation products are made from human cell lines.

Although plasma-derived products potentially risk transmitting blood-borne viruses, all US factor products, whether plasma derived or recombinant, are considered safe by the FDA.

Why would anyone intentionally choose a plasma-derived product instead of recombinant? After all, recombinant factor is the product recommended by NHF’s MASAC. And now we have gene therapy for hemophilia B. Why inject anything other than the missing factor into your child?

For some people, it’s all about cost. Plasma-derived factor is less expensive than recombinant factor. And gene therapy is expected to cost about $3.5 million per shot. People who have high out-of-pocket expenses need safe products, but may choose less expensive ones. Sometimes, the decision depends on the type of bleeding disorder being treated. For example, intermediate purity factor VIII products contain factor VIII combined with VWF (the way it’s naturally found in the blood) and are useful in treating von Willebrand disease.

When choosing your factor therapy, always discuss options with your HTC! Use our factor product guide here, which now includes bispecific antibody products and gene therapy, and bring it with you, and ask what’s best for your loved one or you.

Go Away!

Laurie Kelley February 23, 2022

Spring is coming, and it feels like it, as more and more, the country is opening up. It’s wonderful to see that some of our community events are back in person! Read below to see which ones you might attend. Remember, we are not yet through the pandemic. Please be sure you are vaccinated, and be careful. I’m going to wait a bit more before attending, but remember, you can always attend virtually. Check it out!

Factor IX Families Welcome!

Register for the Coalition for Hemophilia B’s annual meeting in Orlando! May 19-22; travel grants available! Attend also virtually. Register here.

NHF’s 74th Annual Meeting

NHF is thrilled to announce that its 74th Annual Bleeding Disorders Conference (BDC) will take place from August 25 to 27, 2022, in Houston, Texas. After two years of uncertainty, NHF is excited to gather our community in person! You can also attend virtually. Read more here.

Saddle Up!

Texas is the place to be this year! HFA will hold its annual meeting in person in San Antonio, the first time since 2019. Register here!

Remembering Legendary Leaders

Laurie Kelley January 2, 2022

It’s been a sad couple of years, made sadder today by blogging at the first of the new year about the loss of two incredible leaders in our global hemophilia community, one in the US and one in Pakistan, gone in as many weeks. I’ll write tonight about the loss of Val Bias, the first leader in the hemophilia community I ever met, who made a lasting impression on me.

Val Bias and Laurie Kelley at an NHF Annual Meeting

Val Bias was an icon in the US hemophilia community, an unmistakable presence with his dazzling smile and hearty laugh, who possessed charm but purpose, intelligence but an everyman, relaxed posture, a polished speaker who could also sit back and listen deeply. His goal was ultimately to channel his own pain and suffering, of which there was much, into something for the greater good. He was relentless, and successful, in that goal.

I first met Val during my first National Hemophilia Meeting in 1992. I was the mother of a 5-year-old with hemophilia who had just written my first book, Raising a Child with Hemophilia. I knew about HIV and vaguely what was happening to our community, but … not really. Wrapped up in my own non-HIV world, trying to figure out my place in the community, I watched with horror as a room full of patients, parents and advocates began to rip one another apart over what was happening in the community. People were furious at NHF for their lack of leadership, for advising patients to keep taking their medicine. A patient-led group had formed and stood up, shouting and threatening. Suddenly, one clear, commanding voice boomed: “Everyone, sit down and calm down.” I looked around to see who had this voice, this presence, this leadership. It was a handsome man on the podium, who seemed to be the only one with a rational expression and the only one not afraid. Val Bias.

Val and Laurie in 1998

He was famous already in the community for being executive director of the Hemophilia Council of California, a lobbyist for NHF in Washington DC, and president of the board of the Hemophilia Foundation of Northern California. He was an active camp counselor, mentoring the boys with hemophilia. What amazed me most about him was his role in helping get the Ricky Ray Hemophilia Relief Fund Act of 1998 passed. This act allowed monetary compensation for those infected with HIV who have hemophilia.

Later, Val became the first African-American leader of NHF and one of the first patients to become a leader in NHF. His presence was galvanizing and he made impactful structural changes, which required great risks.

The tributes and condolences are pouring in on Facebook but this one, from our mutual friend and colleague, Dana Kuhn, a particularly close friend of Val’s, hit me the most:

“The pandemic of HIV called for a change in narrative of the national organization [NHF]. [A] group of 5 men realized it was their responsibility to teach men with HIV how to protect women from HIV infection and empower men to educate others to become leaders in their communities. These 5 men convinced NHF to create the Men’s Advocacy Network of the NHF (MANN) which brought altering changes to NHF. The change was strategically training and placing men with hemophilia in places of leadership. As a result, Val became chairman of the Board of Directors of the NHF, and Glenn Pierce became president of NHF. Many of us became directors on the NHF Board. Under new leadership the organization began to work through the decisions and responsibilities of the HIV pandemic in the hemophilia community. With the leadership of Val Bias, positive change was made. The community was unified to work on the Ricky Ray Hemophilia Relief Fund Act of 1995. New, improved and safer hemophilia products were coaxed into coming to market. The safety of the Nation’s blood supply became a priority especially through blood/plasma collection processes. Government agencies and Cabinet level committees accepted hemophilia consumer members to these positions turning a listening ear to their concerns and perspectives. NHF created initiatives under Val Bias and Donald Colburn challenging the raising of funds for research in gene therapy for a CURE. Under Val’s leadership ‘Chapter Development’ was made a priority and programs were implemented. Chapters became stronger and more universally developed. I could go on with much more.

Val with Chris and Jess Bombardier, and Laurie Kelley, in 2019, recognizing Save One Life; the last time they would see Val.

“However, how can I impress upon the bleeding disorders community the passion and compassion this leader had for his community and the awesome change he facilitated coming out of NHF’s challenges with the HIV pandemic. We need to honor this leader and the work he accomplished to help make this community better. The NHF Board and leadership, the Chapters, Youth Leadership Programs, Cure for the Disease programs, educational programs, relationships with donors would not be where they are today without his leadership.”

One of the hallmarks of a true leader is not what position they held, or how many accolades they receive, but what legacy they leave behind. Val was a transformational leader who changed our world, for the better. RIP Val; your work is done. Let those you mentored carry it forward.

Learn more about Val Bias in the movie “Bad Blood,” available on most streaming platforms.

Learn more about Val’s contributions in this article in HemAware.

Have an Art!

Laurie Kelley July 28, 2014
I received this exciting announcement from colleague and friend Justin Levesque of Maine–a chance for any artist in our community to present their work at the biggest national hemophilia event in September! Now, many of you may not know but I have an artistic side to me, too. I used to knock off some pretty sophisticated da Vincis. And I know for a fact we have some amazingly talented people in the bleeding disorders community. So let’s see what you’ve got!FOLX is excited to officially announce the opportunity to exhibit your creativity during the National Hemophilia Foundation’s 66th Annual Meeting! Blood Work, the first gallery exhibition to celebrate creative individuals from the bleeding disorders community, will present original works of art and music across several mediums/genres of expression. We invite anyone with ties to the bleeding disorder community to participate in the exhibition using the online form at the website below to submit their work.http://folxfolx.org/bloodwork/

Please take a few moments to carefully read the Terms of Entry. Also, learn more about FOLX’s mission, the jurying process and all submission requirements. If there are any questions about FOLX / Blood Work  or if you’re experiencing any technical issues using this website to submit, please contact Justin Levesque (j@folxfolx.org).

VISUAL ART: Collage, Photography, Woodworking, Performance, Painting, Fashion, DIY house projects… The possibilities are endless! We’re encouraging folks to think outside the box. Submit your creativity in any form! (Due to the nature of the exhibition space, we unfortunately cannot accept 3D works including sculpture, ceramics or installations. However, photographic representation documenting these works is perfectly fine!)

MUSIC: FOLX has joined forces with bleeder music aficionados Blood Vibrations to bring their recent compilations of music from the community to the exhibition. We couldn’t be more excited to have this opportunity. FOLX will construct an interactive exhibition experience that viewers can browse through, listen to full-length music tracks and learn more about both the musicians and Blood Vibrations. In their honor and out of respect for the great work they’ve already accomplished in music, FOLX is calling this experience the Blood Vibrations Listening Center. Please note: Musical submissions do not need to have previously participated in a Blood Vibrations project and should submit their entry using the form at the website. But we highly encourage you consider including your work in a future Blood Vibrations compilation.

http://folxfolx.org/bloodwork/

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