3989 E 170 N
Rigby, ID 83442
Phone 208-344-4476

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If you want to be in the know about what’s going on at our organization, you’ve come to the right place!


This giving season, give more than just stuff to your friends and family. Give the gifts of experiences, charitable giving, delicious food, your time or something handmade.

The new year is right around the corner, and with a solid altruism plan, you’re sure to have the most successful giving year yet!

On November 22, the U.S. Food and Drug Administration approved Hemgenix (etranacogene dezaparvovec), an adeno-associated virus (AAV) vector-based gene therapy. It is approved for the treatment of adults with hemophilia B who currently use factor IX (FIX) prophylaxis therapy, or have current or historical life-threatening hemorrhage, or have repeated, serious spontaneous bleeding episodes.

There are many ways you can say ‘thank you’ to the people in your life. Use these ideas both today and year round!

The workplace is a space to get stuff done. However, it doesn’t have to be all about making money. In fact, the workplace can be a great place to give back.

Historically, many residential substance use disorder (SUD) facilities have denied admittance to individuals with bleeding disorders – the basis of these denials are most often the use of self-administered, intravenous medications such a as factor replacement therapies. The lack of access to residential addiction treatment facilities, can have very serious, even fatal outcomes for bleeding disorder (BD) patients in acute need of help with their addiction.

MEDIA CONTACT: 

Ilana Ostrin 

212-328-3769 
iostrin@hemophilia.org 

 

FOR IMMEDIATE RELEASE

Currently, there are over 167.5 million women (including individuals who identify as women or have the propensity to menstruate) living in the U.S. An estimated 3% of them are living with a diagnosed inheritable blood or bleeding disorder – and certainly many more are living their daily lives with pain and bleeding but are undiagnosed. Recent changes in access to women and girls’ health care are likely to have detrimental effects for the blood and bleeding disorders community.

Although the weather is cooling down, that doesn’t mean volunteer opportunities are also cooling! Use this season to participate in activities made for the colder months.

This year, GivingTuesday falls on Tuesday, November 29th, and November is right around the corner! Whether you’re wanting to donate, organize a fundraiser or volunteer, the time for action is now!

Back Again! The Annual Red Tie Soiree Returns to Honor Community Members in San Francisco

On October 15, the Red Tie Soiree, a yearly gala hosted by the National Hemophilia Foundation, was held in-person for the first time in three years. The community event was held for the first-time on the West Coast, welcoming guests to the historic Julia Morgan Ballroom in San Francisco.

Here’s a few reasons to celebrate this momentous anniversary of United Nations Day, and how you can use it to promote altruism within your own life.

One person can inspire change for the entire world. This year, celebrate National Make a Difference Day on Saturday, October 22. Check out these ideas to help get you started with making a difference in your community and the world.

While Halloween is normally reserved for scary-good fun, that doesn’t mean you can’t get involved to benefit a scary-good cause!

Tell us a little bit about yourself!

My name is Dr. Lacramioara Ivanciu; I’m a resident assistant professor of pediatrics in the Perelman School of Medicine at the University of Pennsylvania. In 2010, when I was a postdoctoral fellow in Dr. Rodney Camire’s laboratory, I was awarded NHF’s Judith Graham Pool Postdoctoral Research Fellowship.

Wonderful! What did your research focus on?

Tell us a little bit about yourself!

I’m Dr. Jyoti Mathur. From 2007 to 2009, I was a fellow with the Judith Graham Pool Postdoctoral Research Fellowship. When I was selected for the fellowship, I was a postdoctoral fellow at Stanford Medical School.

What did your research focus on?

Tell us a little bit about yourself!

Hi! My name is Dr. Laura Haynes, and I work at the Life Sciences Institute at the University of Michigan as a research investigator. I learned about the JGP Fellowship through mentors and colleagues and in 2018, I was granted fellowship.

What did your research focus on?

My work focused on the protein engineering of Plasminogen Activator 1 to develop novel regulators of the fibrinolytic and hemostatic pathways.

Tell us a little bit about yourself!

My name is Dr. Semma Patel. I’m an assistant professor at Emory University. I became a JGP Fellow in 2019, when I was working at Emory as an associate academic research scientist. I had learned about the program from my mentor.

What was the focus of your research?

My project investigated the epitopes recognized in the early immune response to Factor VIII.

How did the JGP Fellowship support your research at the time?

Tell us a little bit about yourself!

I’m Dr. Lisa Smith Webb and I am an associate professor of molecular biology and chemistry at Christopher Newport University. And along with being a Better You Know advocate and member of the bleeding disorder community, I’m a proud past JGP fellow! I was a fellow from 2002 to 2004.

How did you hear about the JGP Fellowship? Had you heard of Judith Graham Pool prior to the fellowship?

Tell us a little bit about yourself!

I’m Dr. Satish Nandakumar; I am an assistant professor at the Albert Einstein College of Medicine. I was awarded the Judith Graham Pool Postdoctoral Research Fellowship when I was working as a postdoctoral fellow in 2017. Before that, I completed my graduate work at St. Jude's Children's Research Hospital in Memphis, Tennessee.

How did you hear about the JGP Fellowship?

My mentor told me about the fellowship and the opportunities it could provide my work.

Tell us a little bit about yourself!

I’m Dr. Sean Quinn; I became a JGP fellow back in 2021. Currently, I’m a postdoctoral research fellow at the Children’s Hospital of Philadelphia. I heard about the JGP Fellowship from my faculty mentor and other researchers at the Children's Hospital of Philadelphia who applied for the fellowship.

What does your research focus on?

My research examines antibody-mediated FV/FVa resistance as a therapeutic approach for hemophilia.

Tell us a little bit about yourself!

Ok! My name is Dr. Kaushik Das, and I’m a postdoctoral research associate at the University of Texas Health Science Center at Tyler. I graduated from the University of Calcutta, India and completed my doctoral studies at Association for the Cultivation of Science, India. After learning about the JGP Fellowship, I became a fellow with the program in 2022.

What is the focus of your research?

Tell us a little bit about yourself!

I’m Dr. Xuejie Chen! I earned my PhD degree in cell biology from Beijing Normal University, P. R. China. Before becoming a research associate at the University of North Carolina at Chapel Hill, I was a postdoctoral research fellow in laboratory of Dr. Darrel Stafford. In 2020, I was honored to receive a JGP fellowship to pursue research in the field of hematology.

What did your research focus on?

Tell us a little bit about yourself!

I’m Dr. Vishal Srivastava, and I am a JGP fellow currently working in Dr. Bin Zhang's lab at the Genomic Medicine Institute at the Cleveland Clinic. I learned about the program through my principal investigator, who received this award previously.

What does your research focus on?

I’m studying the rescue of FVIII mutant expression by translational and post-translational modulation using small molecule therapy.

Living a positive lifestyle has more benefits than just “feeling better.” Focusing on positive thoughts can actually impact your overall health.

Biomarin recently provided an “Update for the Hemophilia Community,” on the ongoing clinical trial program for its investigational hemophilia A gene therapy, valoctocogene roxaparvovec. It comprises a brief overview of current clinical studies, including a phase 1/2 trial in which 15 participants received a one-time administration of valoctocogene roxaparvovec at one of two dose levels – these individuals are in long-term follow up.

FOR IMMEDIATE RELEASE

MEDIA CONTACT:

Ilana Ostrin

212-328-3769
iostrin@hemophilia.org

Meet NHF's Vice President of Research Strategy, Michelle Witkop! Michelle took her passion for pain management and impactful work and joined NHF. She continues to be a vital part of the NHF community and assisting families and patients. Learn more about her role at NHF and her time working with the community!

Tell us a little bit about yourself and your role at NHF.

When it comes to saving our planet, small steps make a big impact. Every person can make an effort toward reducing their carbon footprint and living a more altruistic lifestyle for the world.

Pfizer and Sangamo have announced that recruitment has re-opened for the phase 3 AFFINE study for the investigational gene therapy giroctocogene fitelparvovec. This clinical study is evaluating the efficacy and safety of a single infusion of giroctocogene fitelparvovec in more than 60 adult (ages 18-64 years) participants with moderately severe to severe hemophilia A.

FOR IMMEDIATE RELEASE                                                                                

Ilana Ostrin    

Senior Director of Public Relations and Communications   

iostrin@hemophilia.org  

212-328-3769  

 

Upcoming topics include emerging research, key political issues, and more.

 

Take the time to find out how those around you like to receive gratitude, appreciation and love. You’ll find that meeting them with the love language they most appreciate will help strengthen your relationships.

Patti joined NHF’s team after becoming a member of NYLI in 2018. Learn more about her experience!

Joseph expanded his role at his local NHF chapter with the skills he learned through NYLI. Learn more about his journey!

Dejah uses her NYLI experience to lead others as she pursues her master’s degree in biology. Learn about her story here!

This week, a Peoria Illinois jury awarded reputation-related damages in favor of Dr. Osvaldo Wesly and against the National Hemophilia Foundation. The claim stems from an incident dating back to 2014. Our attorneys plan to appeal the  decision.

NHF has a bright future; we refuse to let inherited challenges overshadow the present and critical mission we are committed to each and every day.

FOR IMMEDIATE RELEASE

On Saturday, September 10, 2022, BioMarin announced that a hemophilia A patient participating in a gene therapy clinical trial – in which they had been treated with BMN270 – has been diagnosed with pre B cell acute lymphoblastic leukemia. 

The National Hemophilia Foundation (NHF) and Medscape are pleased to announce the first live activity in a Virtual Grand Round Series on “Gene Therapy for Patients with Hemophilia.”

Journaling can not only improve your personal life, but it can also improve your altruistic focus. As it turns out, regular writing in a journal has a lot of surprising mental and emotional health benefits.

The U.S. Food and Drug Administration has accepted for priority review the Biologics License Application (BLA) for Sanofi’s investigational therapy efanesoctocog alfa (BIVV001).

This September, remember to focus on you and your personal growth. Even small steps can add up to huge results over time. It all starts now!

A newly released survey of individuals with Hereditary Factor X Deficiency (HFXD) and caregivers of those with HFXD yielded noteworthy insights related to treatment and quality of life (QoL).

Positivity is something you may not always possess, but there are ways to bring it into your life. Surround yourself with positive people, and remind yourself of the positive things in your life and the positive qualities you have.

Get the latest news from the 2022 Bleeding Disorders Conference with the Wrap-up issue of the NHF Show Daily!



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Get the latest news from the 2022 Bleeding Disorders Conference with the Saturday issue of the NHF Show Daily!



Read it now

Get the latest news from the 2022 Bleeding Disorders Conference with the Saturday issue of the NHF Show Daily!



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Get the latest news from the 2022 Bleeding Disorders Conference with Friday issue of the NHF Show Daily!



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The European Commission granted conditional approval to BioMarin's Hemophilia A gene therapy Valoctocogene Roxaparvovec which will be known as Valrox.

With this approval in Europe the regulators will monitor the use of Valrox for 15 years to ensure safety of the therapy.

Click here to the BioMarin press release.

3989 E 170 N
Rigby, ID 83442
Phone 208-344-4476

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