• 2015
Fight NPC

Summary Funded by the Brian and Caris Chan Family Foundation and the Liferay Foundation, Fight NPC is an initiative dedicated to empowering families in their struggle against Niemann-Pick Type C. We know it's easy to despair in the face of such an aggressive, deadly disease, but recent medical breakthroughs have given NPC-affected families across the world hope for a better life for their children. Living with NPC is difficult, but we now believe that living with NPC is possible. Don't give up - join us as we fight NPC. View more details

  • 2015

Fight NPC

Directed : Unknown

Written : Unknown

Stars : J.P. Honsinger Benny Liu Liz Heinze Tim Heinze

All cast & crew

0

Details

Genres : Biography

Release date : Jan 30, 2015

Countries of origin : United States

Official sites : Official Site

Language : English

Production companies : LadyTaylor Films

Summary Funded by the Brian and Caris Chan Family Foundation and the Liferay Foundation, Fight NPC is an initiative dedicated to empowering families in their struggle against Niemann-Pick Type C. We know it's easy to despair in the face of such an aggressive, deadly disease, but recent medical breakthroughs have given NPC-affected families across the world hope for a better life for their children. Living with NPC is difficult, but we now believe that living with NPC is possible. Don't give up - join us as we fight NPC. View more details

Details

Genres : Biography

Release date : Jan 30, 2015

Countries of origin : United States

Official sites : Official Site

Language : English

Production companies : LadyTaylor Films

Photos

Fight NPC (2015) Fight NPC (2015) Fight NPC (2015)

Episodes

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Episode 1 • Jan 30, 2015
Hempel Family: Symptoms of NPC
"The obvious things were they had an enlarged spleen and a mildly enlarged liver...verbal things and some of the other more dramatic stuff came along quite a bit later."
Episode 2 • Jan 30, 2015
Hempel Family: Using Cyclodextrin
"Right now Cassi gets the injection in her back and Addi gets her injection right into a little port that's just right below her scalp. We do that because the outcome of the Niemann-Pick disease is well understood..."
Episode 3 • Jan 30, 2015
Hempel Family: Early Intervention Cyclodextrin
"It might be really hard as a parent to take that step if your child is fully functional...if you know the child has NPC, the earlier the intervention you can do, the better."
Episode 4 • Jan 30, 2015
Hempel Family: Results of Cyclodextrin
Since starting cyclodextrin, the Hempels have seen not only seen a halt to the progression of symptoms, but have even seen improvements.
Episode 5 • Jan 30, 2015
Hempel Family: Cannabis Oil
"We started implementing cannabis oil into their program and we've seen a pretty big reduction in their seizures..."
Episode 6 • Jan 30, 2015
Hadley Family: Family Life
"It's extremely difficult to keep life 'normal' for the family. Any family with a rare disease knows this."
Episode 7 • Jan 30, 2015
Hadley Family: Symptoms of NPC
For many years, Bryan and Laura didn't know their kids had NPC, and doctors didn't test for it. One telltale symptom - an enlarged spleen - could have told them otherwise.
Episode 8 • Jan 30, 2015
Hadley Family: Juvenile Onset of NPC
A lot changed for Peyton when his symptoms manifested at eight years old. In many ways, however, he's the same kid.
Episode 9 • Jan 30, 2015
Hadley Family: Using Cyclodextrin
"We had to drive six hours south to Oakland every two weeks...but we felt so strongly that the cyclodextrin was working and helping that this is something we really needed to do for our kids."
Episode 10 • Jan 30, 2015
Hadley Family: Early Intervention Cyclodextrin
Since the damage NPC does to neural pathways is irreversible, the Hadleys pursued early intervention with their children.
Episode 11 • Jan 30, 2015
Hadley Family: Results of Cyclodextrin
After Peyton began cyclodextrin treatment, both his speech and gait improved noticeably.
Episode 12 • Jan 30, 2015
Hadley Family: Intravenous (IV) Cyclodextrin at Home
"We spent about a thousand hours in the hospital until we finally said, 'Why can't we do this at home?'"
Episode 13 • Jan 30, 2015
Hadley Family: Pursuing Cyclodextrin
"Ultimately, the decision to start cyclodextrin started because we just couldn't wait any longer."
Episode 14 • Jan 30, 2015
Hadley Family: Cannabis Oil
"Peyton is prone to seizures...[cannabis oil] controls the intensity of the seizures and the regularity of them."
Episode 15 • Jan 30, 2015
Dr. Caroline Hastings: Intro
Dr. Hastings has over 15 years' experience treating cancer in children, and works in the Neuro-Oncology Program at Children's Hospital & Research Center Oakland.
Episode 16 • Jan 30, 2015
Dr. Caroline Hastings: Results of Cyclodextrin Hadley Family
After treatment, Peyton told his family and doctor that he could think more clearly and focus better.
Episode 17 • Jan 30, 2015
Dr. Caroline Hastings: Results of Cyclodextrin Hempel Family
With cyclodextrin, the girls have a higher quality of life, and are alive.
Episode 18 • Jan 30, 2015
Dr. Caroline Hastings: Intravenous (IV) Cyclodextrin
This was the first treatment method for Addi and Cassi - a continuous infusion of cyclodextrin over 4 days.
Episode 19 • Jan 30, 2015
Dr. Caroline Hastings: Intrathecal (IT) Cyclodextrin
In October 2012, Addi and Cassi began to receive cyclodextrin directly into the spinal fluid.
Episode 20 • Jan 30, 2015
Dr. Caroline Hastings: Intracerebral (ICV) Cyclodextrin
Addi gets cyclodextrin by a third method: intracerebral (ICV) treatment via a port in her scalp.
Episode 21 • Jan 30, 2015
Dr. Caroline Hastings: Pursuing Cyclodextrin
Knowing that early-onset NPC meant that Addi and Cassi were only expected to live to the age of 10, Hugh and Chris made it their mission to find a way to help their daughters.
Episode 22 • Jan 30, 2015
Dr. Caroline Hastings: Recommending Cyclodextrin
For families battling NPC, choosing cyclodextrin comes with risks. The benefits, however, are potentially huge.
Episode 23 • Jan 30, 2015
Dr. Diane Williams: Early Intervention Cyclodextrin
Giving Kayla cyclodextrin early stabilized her NPC and kept her asymptomatic years after her diagnosis.
Episode 24 • Jan 30, 2015
Dr. Diane Williams: Results of Cyclodextrin
In both Peyton and Kayla, cyclodextrin treatment brought the disease's progress to a standstill.
Episode 25 • Jan 30, 2015
Honsinger Family: Family Life
"Now we have a new normal...We have to be caregivers, we have to be strong, and it's not easy."
Episode 26 • Jan 30, 2015
Honsinger Family: Symptoms of NPC
"Mollie mentioned how, when her brother Jay would laugh, he would sometimes, like, collapse a little bit. It turns out it was cataplexy."
Episode 27 • Jan 30, 2015
Honsinger Family: Using Cyclodextrin
"The only bad thing we heard was loss of hearing. And we decided we would rather have a deaf child than no child at all."
Episode 28 • Jan 30, 2015
Honsinger Family: Early Intervention Cyclodextrin
Time is crucial when it comes to treating NPC - even the three to four months it took for JP to get cyclodextrin could have prevented irreversible damage.
Episode 29 • Jan 30, 2015
Honsinger Family: Results of Cyclodextrin
"A year ago, he wasn't talking, it was like one-word answers. He talks now, again."
Episode 30 • Jan 30, 2015
Honsinger Family: Recommending Cyclodextrin
"I would absolutely 100 percent recommend it, and it's the reason I'm driving to Washington to talk to them."
Episode 31 • Jan 30, 2015
Dr. Anne Nepo: Intro
Dr. Nepo is associate professor of clinical pediatrics at Albany Medical College, and works at the Melodies Center for treatment of children's cancer and blood diseases at Albany Medical Center.
Episode 32 • Jan 30, 2015
Dr. Anne Nepo: Symptoms of NPC
JP had abnormal eye movement and trouble with cataplexy - a condition that causes the patient to suddenly lose muscle tone.
Episode 33 • Jan 30, 2015
Dr. Anne Nepo: Results of Cyclodextrin
JP's cataplexy has improved, and his symptoms show no signs of progression.
Episode 34 • Jan 30, 2015
Dr. Anne Nepo: Intrathecal (IT) Cyclodextrin
Receiving intrathecal cyclodextrin can be anxiety-inducing for your child. Calm, supportive parents and nurses are the most important factor in easing the process.
Episode 35 • Jan 30, 2015
Dr. Anne Nepo: Pursuing Cyclodextrin
Dr. Nepo's background in oncology and hematology made her an ideal candidate for performing JP's intrathecal injections.
Episode 36 • Jan 30, 2015
Dr. Anne Nepo: Recommending Cyclodextrin
Cyclodextrin should be administered under the careful eye of a neurologist, and you should be certain your child has Niemann-Pick Type C and not a disorder with similar symptoms.
Episode 37 • Jan 30, 2015
Dr. Anne Nepo: The Unknow of Cyclodextrin
Many drugs Dr. Nepo uses in her job as a pediatric oncologist are not formally approved for children, so the use of a promising drug like cyclodextrin is not unusual.
Episode 38 • Jan 30, 2015
Dr. John Pugh: Intro
Dr. Pugh is an assistant professor of pediatrics and neurology at Albany Medical College.
Episode 39 • Jan 30, 2015
Dr. John Pugh: Symptoms of NPC
NPC hampered JP's ability to walk, speak and swallow.
Episode 40 • Jan 30, 2015
Dr. John Pugh: Early Intervention Cyclodextrin
Treating Niemann-Pick Type C early is especially important due to its chronic, degenerative nature.
Episode 41 • Jan 30, 2015
Dr. John Pugh: Results of Cyclodextrin
JP takes monthly fine motor skills tests. Though he hasn't shown much improvement on these assessments since starting cyclodextrin, he has shown no signs of deterioration.
Episode 42 • Jan 30, 2015
Dr. John Pugh: Intrathecal (IT) Cyclodextrin
Intrathecal treatment has advantages compared to intravenous treatment because it gets the cyclodextrin closer to its target, which increases the drug's effectiveness and lessens the chance of side effects.
Episode 43 • Jan 30, 2015
Dr. John Pugh: Pursuing Cyclodextrin
Dr. Shur tapped Dr. Pugh, a neurologist, for a team of doctors focused on pursuing a cyclodextrin treatment for JP.
Episode 44 • Jan 30, 2015
Dr. John Pugh: Recommending Cyclodextrin
Cyclodextrin, though still in a trial phase, is worth having a conversation about with your doctor.
Episode 45 • Jan 30, 2015
Dr. Natasha Shur: Intro
Dr. Shur is the division head of Albany Medical Center genetics in the Department of Pediatrics.
Episode 46 • Jan 30, 2015
Dr. Natasha Shur: Symptoms of NPC
JP's symptoms manifested early on, years before his diagnosis.
Episode 47 • Jan 30, 2015
Dr. Natasha Shur: Early Intervention Cyclodextrin
In animal studies, test subjects demonstrated less neurotoxicity from NPC when they received cyclodextrin early.
Episode 48 • Jan 30, 2015
Dr. Natasha Shur: Results of Cyclodextrin
JP has more energy since beginning treatment. Though cyclodextrin isn't a miracle drug, it is an important step toward finding one.
Episode 49 • Jan 30, 2015
Dr. Natasha Shur: Intrathecal (IT) Cyclodextrin
During JP's intrathecal treatments, 6cc of spinal fluid is removed, and then the same volume of cyclodextrin is injected. At the end of the day, JP still has the energy to play lacrosse.
Episode 50 • Jan 30, 2015
Dr. Natasha Shur: Pursuing Cyclodextrin
When JP failed to qualify for an NIH cyclodextrin trial, Dr. Shur formed a team at Albany Medical to develop a treatment for him.
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