Dear British Media – Feel Free To Call or Email!
Dear British Media:
Thank you so much for your interest in our daughters, Addi and Cassi, and their fight against Niemann Pick Type C disease, a fatal cholesterol disorder that is often referred to as the “childhood Alzheimer’s.” There have been two stories that were written today regarding Addi and Cassi’s cyclodextrin sugar treatment and we can’t thank you enough for bringing this important health story to the attention of people in the UK.
Unfortunately, there are some incorrect facts in the stories (see below) that are now appearing online. It also would have been courteous to contact us and conduct fact checking. We realize that it’s a competitive media environment and you are in a world of meeting daily deadlines but we do not appreciate being quoted in stories when words did not come directly from us. We are more than happy to tell our story to the world (we are trying to do this all the time through our website!) and you can call or email us any time day or night as our contact information is on our website.
Again British media, thank you for getting the word out on Niemann Pick Type C disease. While considered a “rare disease,” Niemann Pick Type C disease could have implications for millions of people. The Niemann Pick Type C gene on Chromosome 18 is a very important gene in the human body – we all have this gene and it appears to regulate people’s cholesterol at a cellular level. We hope that more discoveries regarding the NPC gene will come out soon.
The Evening Standard:
• Our names are Chris and Hugh Hempel. Chris is Mom, not Dad, as you have reported in your article
• Our children’s names are Addison and Cassidy, we refer to them as Addi and Cassi – no “e’s” at the end of their names
• The US FDA did not give the approval to us today to start these treatments on our children – this was approved a few weeks ago and we are in the process of gearing up for the treatments
• Children’s Hospital of Oakland California is not conducting the actual infusions – mediports for the sugar infusions were surgically installed at this hospital. Cyclodextrin infusions will take place at Renown Regional Medical Center in Reno, Nevada, USA. We are working towards the infusions right now and hope to start in a week or so
• We have no idea if cyclodextrin can help Alzheimer’s patients as was quoted in your story. However, this is an interesting idea and cyclodextrins amazing properties should be looked into further
• Doctors did not discover cyclodextrin, researchers at UT Southwestern University in the United States have reported on cyclodextrins effects in NPC mice
• Niemann Pick Type C does not only impact children, it impacts adults too and there are a number of adult cases in the UK. Children experience dementia, tangles and other symptoms that are similar symptoms seen in Alzheimer’s disease. Possibly the two diseases are related to disruptions in lysosomal function in the cell? Why are Alzheimer’s researchers not looking more at NPC and Lysosomal Storage diseases??
• The proper spelling for the disease is Niemann Pick Type C, not Niemann Pick’s
• Did you find quotes from Chris from previous videos on our website? Feel free to contact us and we will be happy to give direct quotes that are current
• This is not the world’s first treatment – we actually provided all of the cyclodextrin information we submitted to the US FDA to a family in India and Lebanon. Cyclodextin infusions have been started on two children in these countries based on our ground work. Due to the fact that these countries do not have the same types of restrictions that we have in the United States, these families have been able to start over 1 month ago! This will be the first time in the US this will be tried
Again, thank you for starting the education process on Niemann Pick Type C disease. Please pray for all who have this horrible and devastating illness that is stealing their minds.