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Newsletter (1)

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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