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The Launch of Action For BPAN: Get Involved Now

Nicole Harper and I are absolutely thrilled to announce the official launch of our charity Action for BPAN. This is such an exciting milestone which has to start with an enormous THANK YOU to everyone who has contributed to the previous few years of fundraising efforts, which I am delighted to share that Professor Kurian, a leading academic paediatric neurologist at Great Ormond Street Hospital and UCL, has used the funds to initiate the UK's first research project focused on developing curative gene therapy for BPAN!


This groundbreaking research offers real hope for effective treatments for children living with this devastating life-limiting, neurodegenerative disease. Your support has been instrumental in reaching this pivotal milestone, creating a wealth of hope and forward-moving action that seemed unimaginable just a couple of years ago. 


Inspired by this progress, Nicole and I have founded Action for BPAN to continue driving change, advocating for families, funding research, and creating brighter futures for our daughters and the hundreds of others diagnosed with BPAN. We would love you to learn more about our mission and ongoing work by visiting our website: www.actionforbpan.com.


For our first fundraiser, Step Up for BPAN, we’re climbing Snowdon on Saturday, 21st June, and invite families and friends affected by BPAN to join this meaningful challenge. Together, we’ll raise funds and awareness while symbolising hope and commitment. If you'd like to join us, reach out via our Facebook page or email us on actionforbpan@gmail.com.



Your support has brought us this far - from the bottom of our hearts thank you for believing in this journey with us. 


Please donate if you can, share, follow and spread the word about Action for BPAN across socials.


Together, we’re making a difference.



Kelly & Nicole

Co-founders of Action for BPAN & Proud Mums of Emily and Isabella

 
 
 

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