Our founding member group, Niemann-Pick UK, developed the short four part documentary series "Invisible Interviews", and allowed us to join in with the fourth and final film..."Alec's Story", which gives an insight into the Koujaian family's story, and the journey they have had to this point...it's equal parts entertaining and inspiring.
CREDITS: written & directed by John Lee Taggart // featuring Gail & Alec Koujaian // narrated by Sheila Reid // intro sequence by Lingxi Zhang // score kindly provided by Scott Buckley // assistant producers: Brandon Farrow, Danciu Rareș, and Eleanor Taggart // NB: full credits list featured at the end of the film, but we want to say a HUGE thank you to each and every person who has helped with this project in any way!
Many thanks, as ever, to INPDA International Niemann-Pick Disease Alliance member group Niemann-Pick UK's core grant funders/supporters; BBC Children in Need, The Hollie Foundation, Charities Aid Foundation, and The National Lottery Community Fund, as well as each and every one of the fantastic fundraisers who ensure they can continue to offer their vital support service.
For further information, and to support our small charities please visit www.inpda.org
The International Niemann Pick Disease Alliance (INPDA) is a global network of non-profit organisations, supporting persons affected by Niemann Pick diseases (NPD). The alliance was formed in 2009 to provide a forum for patient groups and professionals working in the field of NPD.
In the 1990s, when a person was diagnosed with NPD they were told they would never meet anyone else affected, as the conditions are so rare. But people directly impacted by the disease – patients themselves, their family members and friends – began setting up support groups, connecting families and drawing in impassioned and dedicated people to fight their corner, determined that no family diagnosed with NPD should face the future alone.
Today, we have an international network of non-profit groups, supporting hundreds of families, and we continue to grow. Despite our language and cultural differences, INPDA members are brought together by a single aim – to improve outcomes for all those affected by Niemann-Pick diseases. By joining together through the INPDA, we give Niemann Pick diseases a stronger global voice, and progress towards effective treatments for these conditions is accelerated.
We align with the following UN Sustainable Development Goals:
