September 28, 2011


2nd Annual Walk for Wishes

Come join the Walkin' 4 Tylor team at Murphy Park on Sunday, October 2nd from 8am to 12pm. Make A Wish of Iowa granted over 176 wishes in 2010 and unfortunately the list of children in need of a wish is growing.

Last year the Walkin' 4 Tylor team raised over $1100 and had over 40 people walk on our team! WOW...we even won an award for the largest walk team. Well we are set out to surpass lasts years numbers so we need your help. Please join our team at Walking for Wishes. There are instructions on how to join our team on the website.

Salisbury Students Perform, Give $1,000 to Race for Adam Foundation

After garnering the most votes in an online video contest, Casey Creveling and Alan Mendez finally got to present their $1,000 prize on Saturday to the charity for whom it was always intended: the Race for Adam Foundation, which funds research of Niemann-Pick Type C, a rare genetic disease.

The pair, who attend Salisbury High School, were inspired by Salisbury Middle School teacher Sean Recke's son, Adam, who has the disease. They wrote an original song, "Tomorrow Afternoon," for a video they entered in a contest to help charities, 1G for Good, sponsored by First Generation, a marketing firm in Allentown. The video received 136,820 votes and can be viewed at

On Saturday, they were joined by their bandmates in Identity Crisis, Tommy Walters and Danny Syvret, also Salisbury High School students, to present the check and perform for the Reckes at Cruise for Adam fundraiser at the Lucky Strokes Mini Golf Course in Bath.

September 18, 2011

Race'em & Wreck'em----Tilt 4 Tylor

Race'em & Wreck'em at Farley Speedway is September 25th starting at 1pm. We have some friends that will be in the camper races who are honoring Tylor. They will be getting businesses to sponsor their team for the entry fee and to donate money to the NNPDF. Their team name is TILT 4 TYLOR!

We would love to see our family and friends out there. So if you have next Sunday afternoon free head out to Farley Speedway to watch a crazy eight race, demo derby, and the camper races. If you have never seen these races before you don't know what you are missing it is an awesome time!

Tilt 4 Tylor

September 17, 2011

15 ALREADY!!!!

September 11th was Tylor's 15th Birthday! We had a blast...Tylor was battling a cold but he still had a great time with his family and friends.

We went camping at Big H for the weekend. Saturday everyone came up for a little party. We had a pinata for the kids which took quite a beating this year. I think next year I will get two, one for the big kids and one for the little kids. We had cake, sang Happy Birthday, and opened presents.

The kids got the adults to play volleyball and Grandma Mulgrew played baseball with some of them. Thank you everyone for your Birthday wishes and cards!! It made for a great 15th Birthday.

Ty chillin' by the fire


Tylor and his little brother Drew

Sorry Ty it didn't survive

Little piggy

NNPDF Family Conference 2011

This year the NNPDF Family Conference was held in Norfolk, VA at the end of July. Sy and I took Tylor along with Sy's Mom and Stepdad. We drove down, it took us about 18 hours. We arrive in Norfolk around 6:30am and I couldn't believe it the hotel had one room ready for us. So the five of us crashed for a few hours before hitting the sites.

Norfolk is beautiful! The view from our room was of the Naval ship yard and the Bay area. We did a little site seeing our first day there but it was also the start of the conference so we couldn't do a lot.

It was so nice to see the families we met in Seattle. We had over 225 people attend this years conference which makes it the biggest one to date!! There were a lot of new families so it was great to connect and bond with them. It is crazy how you can connect with someone you never met just because of this horrible disease. Also this year there were about 26 kids there....all I can say is WOW! I loved seeing all the kids interacting with one another. Our children are so precious.

Well I guess I should get on with what we learned at the conference.

On Friday we heard from Dr. Marie Vanier, she has been researching this disease for three decades, Dr. Dan Ory, Dr. Steve Walkley, and Dr. Fran Platt. This group of doctors gave an overview of NPC Disease research, Support of Accelerated Research (SOAR) updates, Updates on Miglustat and Cyclodextrin as therapeutics for NPC and combination therapy for NPC.

On Saturday we heard from Dr. Marc Patterson, Dr. Kasturi Halder, Dr. Dan Ory, and Dr. Denny Porter. This group talked about medical and clinical update. The topics included: NPC intro adn overview, assistance of undergrads in charaterizing clinical progression for NPC, biomarkers for NPC, development of the NIH Cyclodextrin clinical trial.

Through out the weekend we also did a lot of brainstorming on how to raise money for research for National Niemann Pick Awareness Month in October. We got to listen to the famous Humorist, Carol Ann Small, we learned about an iPad can help our children communicate with us better and of course we had a beautiful banquet dinner to end the conference.

Carol Ann Small

I talked with Dr. Kasturi Halder, she is the Director at the Center for Rare and Neglected Diseases at the University of Notre Dame, about sending Tylor's medical records for the students to review. She was glad to take my information becasue with so few cases they are always looking for new NPC families. I am in the process of gathering all the medical records, I am only waiting on one doctor to get back to me.

I also talked breifly with Dr. Denny Porter, from NIH, about getting Tylor down there for the the NPC Natural History Study. He told me he would be glad to see Tylor and to call Nicole, his assistance, to set up the appointment. Nicole and I talked shortly after we got back. She explained that they would be performing all the test Tylor has had over at the NIH. That means more EEGs, MRIs, another skin biopies and spinal tap, a lot of blood with be taking, eye and hearing exams, and much more. So at first I thought do I really want to put Ty through all this again??? This information they gather from Tylor may help in the future and who knows maybe we will find out how it is processing in him. So we deceided to go for it. So Jill, Ty's Stepmom, Tylor and I are leaving Decemeber 4th and will return on December 9th!! We will keep you posted on how this go down there.

Well know on the the fun stuff...

After the conference we toured around Norfolk. We went on the SS Wisconsin and we drove on the Chesapeake Bay Bridge/Tunnel. That was so cool and weird at the same time. We also visited Grandma Mulgrew's brother in Maryland. We spent a day in D.C. and also got a little bit of relaxation time in before we had to go home. Here are some pictures!!

Virginia Beach

The fishing pier in Virginia Beach

Ty on the SS Wisconsin

See how the bridge goes under the water

Sy and Ty at the Capitol

Tylor and I with the Wright brothers
Eating Crab on the beach