Celebrating Innovation and Achievement at the NHF Red Tie Soiree 2017

By | 2017-06-27T08:41:12+00:00 May 24, 2017|Events, Rare Diseases, Viewpoints|

JUICE Pharma joined the hemophilia community at the 7th Annual Red Tie Soiree hosted by the National Hemophilia Foundation (NHF). It was a beautiful evening on the waterfront at NYC’s Chelsea Piers, with temperatures reaching a record 92 degrees!

National Hemophilia Foundation
NHF is dedicated to finding better treatments and cures for inheritable bleeding disorders, and to preventing the complications of these disorders through education, advocacy and research. Established in 1948, the National Hemophilia Foundation has 51 chapters throughout the country and serves 3.2 million people affected by bleeding disorders.

Partnership with JUICE Pharma

JUICE has been working with the NHF for over 5 years, engaging in a fruitful partnership that has only grown over time. We sit on the NHF Business Council, working hand in hand to support institutional advancement. The relationship between NHF and JUICE was founded on one shared value: A commitment to serving and advancing the study of hemophilia and associated bleeding disorders. Thanks to the foundation’s extremely active New York City chapter, we’ve been given ample opportunity to support the cause.

2017 Red Tie Soiree
The community came together to celebrate the achievements of Amy D. Shapiro, MD, Joe Pugliese, Edmund J. Pezalla, MD, MPH, and James Jorgenson, MS, RPh, FASHP. Each of whom has dedicated their time and passion toward research, innovation, and ensuring access to life-saving drugs for those with bleeding disorders. Standing ovations and fireworks accompanied the recognition of their hard work and success.

CEO Val Bias kicked off the evening by stressing how it’s up to all of us to help reinforce the importance of access for all those in our community with bleeding disorders. This March, during Bleeding Disorders Awareness Month, the NHF went to Washington DC—hosting over 400 constituents and lawmakers—to advocate for patient protections in healthcare insurance legislation.

After the award ceremony, led by the fabulous and funny Jodi Applegate, we were treated to guest speaker, Daniela Delgado. At only 9 years old, Daniela spoke eloquently about the complications of the disease, and all the planning she and her family need to do to ensure she’s able to lead an “amazing normal life.” Daniela has dedicated her time to creating awareness of bleeding disorders. 5 years ago, she created “Daniela’s Little Wish”—a mission where the family donates birthday cakes to children with severe disabilities or illnesses.

Red Tie Challenge
This year, the Red Tie Soiree honored the memory of John Indence, a VP for Marketing & Communications at NHF who passed away last year. John was responsible for creating NHF’s Red Tie Challenge. By highlighting “March is Bleeding Disorders Month,” the Red Tie Challenge is both a fundraising and an awareness initiative to help advance the fight against inheritable bleeding disorders. #RedTieChallenge—red ties have been seen all across the world—from Pittsburg, PA to Petaling Jaya, Malaysia—and every continent in between!

Success!
The evening was a success—NHF raised over $40,000 in donations from the night’s auctions! But it doesn’t end there, to see how you can help please visit the NHF Website—where you can see the community’s efforts at work, and donate to NHF.

About the Author:

Kelley Connors

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