JP's Team

For: Donna and Jay Honsinger
Organizer: JP's Family and Friends
$26,482
of $25,000 goal.
Raised by 233 donors
100% Complete
Donate Now

The Story

Although JP’s family is fortunate to have very good health care coverage, their friends have set up "JP’s Fund" as a safety net, in the event of unforeseeable medical and/or travel expenses down the road. 

As you all know,JP loves to play any sport, as well as fish, four wheel with Dad and be the typical younger brother to his sister Mollie!  JP’s team is made up of family and friends who want to help JP and others beat Niemann Pick.  JP’s team is growing every day, and there is always room for more people to get on the roster!  Please join the team today!

JP’s Team chose YouCaring and WePay as our donation partners because they are secure and reliable.  They only collect a very small percentage of JP’s donations.  JP’s team would like to inform you that your donations are not tax deductible but will be put to use to aid JP’s family with expenses that will arise.

Please do not hesitate to contact Karen Bobarakis at [email protected] or Heather Taggert at [email protected] if you have any questions.  We would also love to add your pictures to JP’s Gallery, so pass them on to Karen!

About Niemann Pick Type C:

Niemann-Pick Type C (NPC) is a rare neuro-degenerative disease that primarily strikes children before or during adolescence.   NPC is an inherited cholesterol metabolism disorder.  One in every 150,000 children have NPC and over half of people with this disease will be diagnosed by the age of 10.  Symptoms can include deterioration of memory and balance, lung and liver failure, delayed motor development, and seizures. The disease usually appears in early childhood, leading to neurological problems that there is no cure for at this time.

While there is not yet a specific treatment for NPC, supportive therapies are available. These include medications to control seizures, abnormal posturing of limbs, and tremors. Physical, speech, and occupational therapy are also used to help with daily functioning. 

To hear a video from Mayo Clinic doctor, Marc Patterson, follow this link: http://www.youtube.com/watch?v=LKgQVz__-hM

This is going to be a tough road for JP and his family so please keep us in your prayers.  We will update this site with stories, pictures and how JP is doing so please visit often.


Fundraiser Updates

Posted on September 18, 2015

Posted on September 18, 2015

Two years ago today, JP was diagnosed with Niemann Pick Type C. Our life has changed and will never be the same again. JP is in 7th grade and so far is liking all his classes. Monday through Thursday after school he is at some type of doctor or therapist appointment. His day is full but always finds time to play lax or baseball with dad or have a friend over to the house for a couple of hours. JP still receives his spinal taps every two weeks, this week we will be increasing the dose. Usually with an increase of this experimental drug that he receives is a loss of hearing. JP receives a monthly hearing test to monitor this. Albany Med is like a second home to us, we spend a lot of time there. We are so blessed that we have this wonderful hospital with caring people in our backyard. Please continue to keep JP in your prayers and thoughts. Hope to see you this Tuesday at Salty's Pub and Bistro for the pasta fundraiser and/or at our big fundraiser at the Century House on November 9th, the Wide World of Sports 3. We appreciate all the support, thank you!

Posted on July 21, 2015

Posted on July 21, 2015

It has been forever since I posted on this site, sorry about that. JP is doing ok right now. He went to his neurologist a month ago and the doctor seems to think that within the year, JP has stayed the same or maybe a little better than last year. We went for his monthly hearing test yesterday and his loss of hearing in one ear is heading back in the right direction. On Friday he goes for his annual swallow test and ultrasound of his liver and spleen. Hoping for more good news! JP is attending summer school for a couple of hours a day, he doesn't ever complain about going, he likes school. He usually has about three doctors appointments a week and he doesn't complain about going to them either. Next week he is going to get fitted for leg braces. Not sure how we is feeling about this! Thank you always for keeping us in your prayers and thoughts.

Posted on October 18, 2014

Posted on October 18, 2014

It's been a few months since I last posted. We have been very busy since school started. JP is now in 6th grade at Acadia Middle school and enjoying his classes. He does have a 1-1 aide that helps him throughout the day. He comes home from school exhausted and most days takes a nap before dinner. He is still playing lax every morning with dad before school and tries to get in a game or two before bed. JP is receiving a spinal tap every two weeks of the experimental drug, cyclodextrin. We have a great team of doctors at Albany Med and JP doesn't mind going for his "poke" as he calls it. This past Thursday was JP's 10th injection since we started in the spring. He has to go to Albany Med for a monthly hearing test and routine bloodwork. Our visits to Albany Med are becoming part of our new "normal" life. 
It has been over a year now since our diagnosis. JP was diagnosed last September. As we look back at our year we have accomplished a lot, thanks to many people. It's been a year of ups and downs but we have learned to take life day by day. We adjust our day whenever we hit a bump and continue to move forward.
We have our annual Wide World of Sports 2 Fundraiser coming up on November 17th at the Century House. Last year there were over 450 people there to support JP! This year, JP will be attending the event. Please come out for a great event and help us raise money for research. We need to find a cure to this horrible disease. Tickets may be purchased at https://fundabilities.com/JPs-Event-2014.
We are also looking for items for our silent auction. If you would like to donate to this please contact Maribeth Piche at 506-3968.
Thank you for again for being part of JP's Team, it's people like you that  make a difference.
believe. hope. perservere.


About the Organizer

Report Fundraiser

Report Fundraiser

Please report potential fraud and Terms of Service violations only. Personal disputes will not be reviewed.

We require this in case we need to contact you for further details.*

* YouCaring will not distribute your phone number to any third parties or use it for marketing purposes.

Comments

Supporters

Add Our Donation Widget to Your Site
Grab Our Widget

JP's Team

Grab Our Widget
Donate Now