JP's Team

For: Donna and Jay Honsinger
New York
Organizer: JP's Family and Friends
JP's Team (Donna and Jay Honsinger)
$27,157
of $50,000 goal.
Raised by 240 donors
54% Complete

The Story

Life changed for us almost 4 years ago when JP was diagnosed with Niemann Pick Type C, also known as childhood Alzheimer's. We take life day by day and try to get through the day strong. There are some days better than others but we still BELIEVE, HOPE and PERSEVERE!

JP is entering 9th grade with his 1:1 aide and will continue to audit all this classes throughout high school. He works hard when he is at school and enjoys being with his peers but doesn't take tests or do homework. JP's short term memory is declining but he has great long term memory.
Mom is still working at Cohoes High teaching math and Dad has retired to be able to bring JP to his appointments every week and stay home with him when he doesn't go to school. JP is still receiving his spinal taps, aka "his poke", every two weeks. Getting close to #80. It's a routine now for JP to go to Albany Med but he is experiencing more back pain, sometimes he is in bed for a couple of days following the poke.  
JP continues to love life and keeps his positive attitude. Mollie, is entering her senior year and working on the college stuff. Mollie has become a strong, caring teenager through all of this.
We as a family continue to fundraise for Niemann Pick Type C to help find a cure for JP and the other 500 children fighting this life threatening disease. This past year, we have lost two of JP's closest NPC friends. This really hits hard and sometimes tough to continue to fight but we have to because it is so rare. If it wasn't for all the families in this small NPC community all fundraising we wouldn't be able to afford to pay the scientists and researchers working to find a cure.
Please consider donating to JP's Team and ALL the money we raise is donated to research. Alone we are RARE, together we are STRONG!

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.


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