Action for BPAN
Action for BPAN is a charity founded by two dedicated mothers, Nicole Harper and Kelly Sayers, whose lives were forever changed when their daughters were diagnosed with BPAN (Beta-Propeller Protein-Associated Neurodegeneration). Despite the rare and devastating nature of the condition, Nicole and Kelly found each other through a worldwide Facebook group for BPAN families, where they connected over their shared journey and the urgent need for a cure.
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Motivated by their love for their daughters and the lack of available treatments, Kelly and Nicole Co-founded Action for BPAN with a mission to raise critical funds for research, support families affected by BPAN, and advocate for better awareness and care.
Kelly's incredible fundraising efforts have already raised over £100,000, which helped kick-start the first stages of gene therapy research at Great Ormond Street Hospital in 2024. This ground-breaking work is paving the way for potential treatments that could change the lives of BPAN children worldwide.
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With an unwavering commitment, both mothers have dedicated their time and energy to this cause, not just for their daughters, but for every child affected by BPAN. They believe that together, with the support of the community, we can find a cure and give every child a brighter future.
OUR VALUES
Commitment, Transparency, Innovation, and Integrity. These core values have been at the heart of the Action for BPAN mission since our founding.
We wholeheartedly commit to our work with passion and dedication, striving to make a meaningful impact in the lives of those affected by BPAN. We operate with transparency, openly sharing our efforts with the community and inviting others to join us in our mission. We also challenge ourselves to think creatively, applying an innovative approach to tackle challenges and drive meaningful progress.
Most importantly, we operate with integrity and respect, ensuring that every action we take reflects our unwavering commitment to those we serve. We aim to bring simplicity to a complex disorder, empowering people with the knowledge that there is always something positive that can be done.
This mission continues to guide the success and purpose of Action for BPAN, inspiring hope and progress every step of the way.
OUR TEAM
This is our team of amazing trustees! Our trustees come from diverse backgrounds, including healthcare, law, business, fundraising, and of course our personal connections to loved ones with BPAN, together they work to ensure the success of the charity. They are united by a shared goal - to advance research, raise awareness, and ultimately find a cure or treatment for BPAN.
Kelly Sayers
Co-Founder & President
After Emily’s diagnosis in 2020, I made the life-changing decision to leave my 20-year career in IT software sales to dedicate myself fully to our family. Alongside being Emily's full-time carer and advocate, I am also a proud parent to her older brother Maxi, whose needs and wellbeing remain central to our lives. Supporting both of my children required constant learning, research and unwavering commitment - a responsibility I embrace wholeheartedly.
My curiosity about people and what drives them shapes my approach to challenges. I strive to give my best in all I do, guided by integrity. Stepping outside my comfort zone is a personal mission, and I enjoy building connections, fostering collaboration, and creating win-win solutions.
Words cannot capture my passion and determination to find a cure for BPAN and support the incredible community on this journey. This mission is my purpose.
Schalk Visser
Treasurer
Schalk Visser is a finance and capital markets executive with over 25 years experience in investment management, investor relations, and capital raising across global markets.
Currently the Managing Director of Selinus Partners Ltd. Schalk has held senior leadership roles at major firms including Mitsubishi Estates, AEW Europe, and CBRE Investors. His expertise spans capital raising, fund structuring, compliance, and global team leadership. Schalk holds a B.Com in Finance and Economics, a B.Com Hons. in Investment Management, and is a CFA charterholder.
Nicole Harper
Co-Founder & Secretary
Mother of Isabella, who was diagnosed with BPAN in 2021. When we received Isabella’s diagnosis, we were faced with the harsh reality that there was no UK charity dedicated to BPAN
This sparked a drive to connect with other families both in the UK and around the world, seeking support and understanding.
I am a determined and focused person who has always been a problem solver. I simply cannot accept Isabella's current future, and this mindset has fuelled my commitment to do everything in my power to change the course of her life. Through this journey, I’ve learned that research into BPAN is progressing, and I hold onto the hope that a cure or treatment is within reach.
Inspired by this hope and motivated by my love for Isabella, I’ve dedicated myself to Action for BPAN—using my skills and passion to support research, advocate for families, and ultimately make a meaningful difference in the lives of those affected by this rare condition.​​​​​
Susannah Kemmis
Legal Trustee
​Susannah is a qualified solicitor with over 25 years experience in the Investment Banking & Finance and Commercial Property legal sectors. She is Owner & Director of a corporate commercial legal practice and has spent many years sitting on a Board of an Educational Trust.
Susannah, her husband and two children are keen fundraisers. They've undertake many challenges, including recently climbing Mt. Kilimanjaro and diving with sharks, for causes close to their hearts and they are fully committed to doing everything possible to raise awareness and funds to support Action for BPAN.