by Amy Marquez, Board Member, Hemophilia Alliance Foundation

The Hemophilia Alliance Foundation has been administering grants to eligible organizations since 2013 thanks to the generous funding from the Hemophilia Alliance and The Alliance Pharmacy. The goal of these grants is to enable organizations to build capacity to carry out their mission and to directly support consumer financial assistance programs.

Last month, the Hemophilia Alliance Foundation Board of Directors met via zoom to review, score, and vote on this years’ applications for project and patient assistance grants. It’s a fun job to be able to give away money, as can be seen by all of our smiling faces! Especially knowing the funds are going back to support the inheritable blood disorders communities!

For the 2023 grant period, we were able to award grants to 76 organizations overall, totaling $747,575 in funds. This included 45 local chapter/organizations, 19 Hemophilia Treatment Centers, 6 national organizations, and 6 of the Regional Core Centers.

This year we saw an increase in the number of applications for funding to help send patients, families, or staff to some of the many great conferences that are now taking place in-person again versus the past couple of years, or to help local HTCs, foundations, or regions host their meetings or retreats again in-person.

The grant cycle for Project/Patient Assistance runs April 1st to March 31st.

Also, our 2023 Innovation Grant cycle will be coming soon. Look for the announcement in the next few weeks. The Innovation Grant is a large grant up to $50,000.

For more information about the Hemophilia Alliance Foundation or our grant opportunities, visit our website!

by Karen Bowe-Hause, Director Member & Community Relations

The Hemophilia Alliance is again collaborating with NHF in support of their 2023 Unite for Bleeding Disorders National Walk campaign and is launching the 3nd annual HTC Wall of Walkers Challenge. This initiative is meant to build upon the goal of enhancing relationships and collaboration between HTCs and Chapters. The objective is to increase HTC participation in the NHF Walk program to provide support for local Chapters. Attached is the current 2023 Walk schedule, indicating HTCs that have registered teams thus far. We have encouraging statistics from NHF that lead us to believe this year will be the best year yet for our Wall of Walkers HTC Challenge.

March 2022 Chapter member registrations – 272
March 2023 Chapter member registrations – 622
An increase of 129%

March 2022 Chapter Team Captains registered – 73
March 2023 Chapter Team Captains registered – 185
An increase of 153%

In 2022, 41 HTC teams participated in the Unite Walk Wall of Walkers Challenge. These 41 teams recruited more than 300 fellow staff members to participate as walkers and together raised more than $40,000 for local Chapters! Since Walks do not start in earnest until next month, we are hopeful we will see an increase in HTC registrations later this month and beyond. Watch for updates on a regular basis.

Once again, NHF has created Walk magnets that can be distributed to your patients during routine clinic visits to encourage support for your walk. If you would like to receive magnets, please send an email with your request to karen@hemoalliance.org and I will pass along your information to NHF. Please include the following information in your email:

Name
HTC name
Address where you would like the magnets sent to
Number of magnets you are requesting

As a presenting sponsor, the Alliance has the opportunity to address the crowd at the beginning of each Walk. Your primary contact will reach out to you, prior to the local Walk in your area, to let you know if he/she will be available to attend the Walk and if so, coordinate details to highlight the HTC in attendance and support of the local Chapter during their opening remarks.

All Alliance member HTC participating teams will be acknowledged on the HTC Wall of Walkers located on the Unite Day landing page on NHFs website as well as on the Alliance website. The HTC team name along with photos or a logo will be featured in a scrolling fashion and the site will be continuously updated throughout the Walk season. In addition, a travel grant to the 2024 NHF Bleeding Disorders Conference will be awarded to 5 member HTCs raising the most funds for their local Chapters. The location of the 2024 BDC will be shared as soon as that information is made available.

REMINDER TO TEAM CAPTAINS: Take a photo of your team, regardless of how large or how small, and email to me (karen@hemoalliance.org) so we can add your team to the Wall of Walkers site on both the Alliance and NHF websites!!

The Hemophilia Alliance thanks everyone for your participation and efforts to benefit your local Chapter.

by Ashley Gregory, Program Director, FAIR Time for Women

FAIR Time for Women, a national coalition has done so much! We need YOUR support though in order to complete our goals which are:

• Support HTCs in equitable treatment for women, girls and those assigned female at birth with bleeding disorders
• Obtain HTC sign on for MASAC #264 & Bleeders’ Bill of Rights
• Increase storytelling for women and girls with bleeding disorders
• Provide one central location for information seekers

Here are some updates in a nutshell:

1. Four sponsors have joined with a fifth in process right now!
2. Two Bleeding Disorders Organizations have jumped on board to promote and share FTFW’s mission at their advocacy events!
3. Website launch scheduled for 4/17, World Hemophilia Day
4. Algorithm created for HTC use in diagnosing and treating women!
5. Social Media Influencers identified and ready to launch
6. Logo, business cards & promo items created
7. Rare Disease Week, Washington Days, Coalition for Hemophilia B, Hemophilia Federation of America presence

Please take a look at the prospectus attached and let’s meet to plan how we will together end the inequity in bleeding disorders today!

When: Monday, June 12th, 2023
Time: 1:00 PM ET (12:00 PM CT, 11:00 AM MT, 10:00 AM PT)
Faculty: Dr. Lydia Pecker
Moderator: Dr. Andrea Roe

This webinar will address the following learning objectives:

• Describe hormonal contraception considerations for people with sickle cell disease
• Discuss how to balance thrombotic risks associated with treatment on the one hand and high-risk pregnancy on the other
• Explain how progesterone-only contraception is the preferred hormonal contraception for people with sickle cell disease

Register Today