Niemann-Pick Children's Fund, Inc » featured_slider

Welcome! Come Check Out Our Blog

Michael G Stults — Sun, 23 Jan 2011 01:05:34 +0000

Welcome! Make sure to stop by our Blog or subscribe to updates! We look forward to connecting with you.

To read more posts: http://bit.ly/NPCF_Blog

Check out the Videos!

We’re Famous, Almost | Palm Connections and Mashable

Michael G Stults — Sat, 09 Oct 2010 18:08:45 +0000

Niemann-Pick Children’s Fund was featured on Mashable.com through Palm Connections. This is huge because literally thousands upon thousands aggregate news and read these publications. A few months back I ran across an opportunity on Facebook to submit an application to be apart of Palm Connections. They wanted to utilize technology and good causes in conjunction with one another to share with the world. I thought as I filled out that application there is no way out of thousands of applications we would be selected.

On July 30th I received an email back:

“Your story would be great for this. It’s unfortunate, and I’d hope that in telling the story there’d be some uplifting successes along the way, but it would certainly be a good cause for raising awareness. Basically this program is all about showing people doing good things, inspiring things, ambitious things…and how Palm can help do more by being better connected.”

We were elated that we had this opportunity! In conjunction we started our Facebook Page for the NPCF. We already had a “Cause” page but Palm wanted us to have more of a hub for information and sharing. You can visit our Facebook Page here and Like it : Niemann-Pick Children’s Fund.

Niemann-Pick Type C Disease is a rare neurological disease that affects very few. Maybe 75 in the United States currently. To put into perspective there are well over 300 million people here in the United States. To say this disease is “rare” is an under statment.

With no cure or effective treatment as of today, this disease will claim the lives of mainly children and a handful of young adults. NPC stems from chromosome 18 where each patient has two mutated genes. One inherited from each parent. Those chances are one out of four with each pregnancy. Most carries of this gene are unaware and most medical professionals are equally unaware because of the “rareness” of NPC.

The core issue is the cells inability to metabolize cholesterol. To put it simply, something in the “recycling factory” of the cell malfunctions. This is the good cholesterol your body needs to live. It is essential to everyone reading this post. You and I have the same gene (maybe not mutated).

Through this experience we will be sharing photos, videos, links, and posts with our Palm Phones. Our overall goal is to raise awareness. October is Niemann-Pick Disease Awareness month.

Read the full article here: Palm Gives 500 Pre Plus Phones to Good Causes

Impact of Niemann-Pick Type C

Michael G Stults — Wed, 22 Sep 2010 03:21:45 +0000

Actelion Pharmaceuticals LTD produced a short video on two families and how Niemann-Pick Type C Disease has impacted their lives. Hollie Carter and Annie Pyne are featured in this video. They both are youngsters living with this disease. At first sight we all instantly start to evaluate what someone with Niemann-Pick Type C looks like or any other debilitating disease. The important feature to note is this disease can strike at any time. Some look completely “OK” and others you can tell something just isn’t right by their actions. Either way this horrible disease claims their life in it’s unrelenting attack on the nervous system.

Watch the video below and please share!

Summary edit of the Hollie and Annie films from sue lowe on Vimeo.

Promising Therapies for Niemann-Pick Type C Disease

Michael G Stults — Sat, 10 Jul 2010 03:59:50 +0000

In Rockville, MD on June 3-4th many of the researchers looking into different areas and avenues for Niemann-Pick Type C came together to discuss promising therapies. Although research is making progress, parents of NPC patients never feel that research is happening fast enough. That is greatly to be expected. The NPC community is making large strides in the right direction!

The National Niemann Pick Disease Foundation was very kind in putting together a recap of that meeting in a pdf format which is viewable here: Promising Therapies for Niemann-Pick Type C Disease.

Join Our Cause On Facebook!

Michael G Stults — Sat, 27 Mar 2010 15:27:42 +0000

Come Join Us On Facebook!

Help us spread the word about Niemann-Pick Type C! Join our cause on Facebook! Niemann-Pick Children’s Fund, Inc. was organized in December of 2008 in order to raise awareness of Niemann-Pick Disease Type C and its affect on families in America; to raise money to promote research to find treatments or a cure for Niemann-Pick Disease Type C: and to provide support to individuals and families affected by this disease through existing channels.

Dementia in Our Kids – The Uninvited Thief

Michael G Stults — Sat, 27 Mar 2010 04:20:31 +0000

Dementia, who was the thief that thought up this bright idea? Sorry honey, what did you say again? OK that might be a case of selective hearing. We’ve all have had family or known people who have suffered with this horrible symptom. When you mention dementia, Alzheimer’s comes to mind or we all tend to think of an elderly person with their hands on their head not able to remember out of frustration pounding the table with their fists. STOP!… WAIT!… Did you know our children can suffer from dementia too?

I recently read a post from another family who has twin girls with Niemann-Pick Type C (Addi & Cassi Hempel) and it prompted me to finally put some of my thoughts down on “paper”. I agreed so much with what was wrote on that blog post that I couldn’t wait any longer. Niemann-Pick Type C is just one of many diseases that dementia plays a critical role in the quality of life that children/ young adults will have. I think about our caregivers, teachers at school, and even our children’s peers that are uneducated about dementia who could benefit from understanding the signs. They would be more equipped to cope and manage someone with dementia, especially our precious little ones who we love so much.

“Our lives are made in these small hours, these little wonders, these twists and turns of fate. Time falls away, but these small hours still remain.”

-Rob Thomas-musician

Dementia causes a loss of memory, confusion, issues with speech and language, changes in mood or behavior, loss of building new skills, losing their appetite and having the ability to complete simple tasks. Being a parent of Brisan and Parker Stults who has Niemann-Pick Type C, you learn to deal with a lot of patience. It’s not an easy task but with education you can better equip yourself to handle this additional burden. For instance with Parker we notice restlessness, unable to sleep at night, and very repetitive with phrases or just words. To most parents that can become pretty annoying! The underlying issue is due to dementia but backed by their horrible disease Niemann-Pick Type C. It’s such a sad reminder that they only have a childhood to live a lifetime yet they’ll never remember it.

I read a website recently that said “dementia doesn’t happen to children”. That is false because of the stigma placed with this topic. Dementia is an uninvited thief who holds nothing back. Just remember children can have dementia to and this isn’t just an elderly issue. Find the education you need to bring awareness to your community about this issue.

Dementia in children, teenagers and young adults A guide for parents, teachers and care professionals

Today, there is no cure or effective treatment

Michael G Stults — Fri, 27 Nov 2009 02:33:26 +0000

Thank you for stopping by! Niemann-Pick Type C Disease is a every day reality for our two eldest sons’ Brisan and Parker including our whole family. Their prognosis captures the meaning of Niemann-Pick Disease Type C (NPC). It’s a genetic neurological disease that strikes children through accumulation of cholesterol and other excess fats in the cells of the liver, spleen, and brain. When brain cell function is blocked, the child loses coordination, stumbles, falls, and eventually will need a wheelchair, hospital bed, and other adaptive equipment. As the disease worsens, other devastating symptoms develop, including loss of the ability to speak and swallow, and seizures may occur. The health of children with NPC declines until ultimately, the disease claims his or her life. This disease affects roughly a 75 people in the US and around 500 worldwide (ever). The NPCF was formed to help create a entity that we could bring to communities that surround us the awareness needed to shed light on a disease that researchers are taking interest in. We felt after facing this reality that research has a different time line than parents yet they are making progress then why could we not help out in some shape, way or form?

Today, there is no cure or effective treatment for Niemann-Pick, but research is making progress. Tomorrow through research made possible by the financial support of generous contributors, these precious children can be saved and hopefully our Brisan and Parker! But they need your help now. This disease once solved or partially will provide a gateway into other storage disorders and it’s relation to Alzheimer’s, atherosclerosis, HIV/Aids, and stroke.

The other ugly truth that we face as their parents is the disease is always fatal at the time I write this. Can you imagine the brutal honesty of the this whole situation? Pretty surreal at times… can someone pinch us? We were told at the appointment of the official diagnoses on 8/8/08 that we should take them home and love them the best way we can in the mean time.

We encourage you to cherish ever moment with your family and don’t take for granted the intuitions you may have. The NPCF will need your support to make a bigger impact! If you have any ideas or collaborations please reach out to us.

Sincerely,

Michael & Jennifer Stults

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Dementia. It changes your life.

Michael G Stults — Sat, 24 Oct 2009 21:09:41 +0000

Welcome to Niemann-Pick Children’s Fund! Please stay patient while we complete our site. “Dementia is something that is usually associated with older people. However, children, teenagers and young adults can experience dementia as a result of a number of rare diseases and conditions. Niemann-Pick Disease Type C (NPC) is an example of one of these diseases, and one of its main symptoms is dementia.” (Hinton et al, 2005)

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