We would like to provide you with an update to our accomplishments for 2023 as well as our goals moving forward in 2024. We want to thank you for supporting us from the beginning!
Better Future 4 U emerged in 2023, founded by parents of HNRNPU individuals driven by a shared determination to create transformative change and propel research toward developing a comprehensive treatment for all HNRNPU patients. Our likeminded goals support the mission of the Better Future 4 U foundation as we aim to improve the lives of those impacted by this rare genetic disorder by fundraising for research and treatment development, and by providing resources and support to patients and their families.
In our inaugural year we have:
Filed 501(c)3 Nonprofit Status
Created our Website
Established our Executive Board
Communicated with researchers who are investigating HNRNPU
Raised $15,000 in private donations
Raised $36,385.11 to date through our first giving campaign
Began creating our Advisory Board
Opened social media accounts to promote awareness of HNRNPU
Created a research Facebook Group
Acquired a more profound comprehension of HNRNPU and treatment options
Received a step by step proposal to begin gene therapy development and the costs associated
Became a Global Advocacy Alliance Member
Gained knowledge by attending Global Genes Rare Advocacy Summit, The Purple Day Expo, and The Epilepsy Awareness Day Expo
Made in person and virtual connections with HNRNPU families
Our work has just begun and our 2024 goals include:
Funding research
Spreading the awareness of HNRNPU online as well as in person
Bolstering and empowering our HNRNPU community
Opening an online merchandise store to expand our fundraising efforts
Hosting our first golf tournament
Meeting more HNRNPU families and creating a database for connection
Succeeding in our fundraising goals
Assisting in collecting vital information for research
Attending educational opportunities, such as the Rare Drug Development Symposium and the NORD Summit
Sharing more HNRNPU patient and caregiver impact stories
Completing our Advisory Board
Collaborating with companies such as Gene Dx, Invitae, and Unique
Expanding our rare disease network and fostering relationships with other organizations in the rare community
Participating in the Gene Family Meeting, hosted by The HNRNP Family Foundation and the Yellow Brick Road Project in Seattle, WA July 28-30, 2024.
As we navigate the path ahead, your involvement becomes the catalyst for change. Every contribution, be it time, resources, or advocacy, propels us forward in our commitment to HNRNPU. In the spirit of collaboration, we invite you to share your thoughts, ideas, and stories with us. After all, Better Future 4 U is not just an organization; it's a movement powered by people like you.
Thank you for being an integral part of Better Future 4 U. Together, we are turning compassion into action and making a lasting impact on the lives we touch.
With gratitude,
The BF4U TeamSonja, Radha, Rusty, Michelle, Dustin, Amanda and Foziya
Better Future 4 U is pending 501c3 status
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