Kaitlyn Kay Bourgeault

Kaitlyn Kay Bourgeault (NPA)
7/1/09 - 3/22/12

With heavy hearts, we share the news that Kaitlyn Kay Bourgeault, the daughter of Deanna and Chip Bourgeault of Indian Trail, North Carolina, passed away due to the effects of Niemann-Pick Disease Type A (Acid Sphingomyelinase Deficiency or ASMD).

Kaitlyn and her family have touched and inspired so many with their strong faith and the support of their loving community, sharing their story and poignant photos through their family's blog, Kaitlyn's Korner.

For service information, visit the NNPDF's NewsLine page.

The family has asked that in lieu of flowers, donations may be made to the NNPDF in Kaitlyn's name.

Our deepest sympathy goes out to Chip and Deanna, and all of Kaitlyn's family and many friends.

Special Birthday

I've had a wonderful day! Breakfast with Aaron and Andrea and their 5 kids. Lunch with Maria and her son,Sam. Dinner with Larry at Olive Garden. (Thank you Joseph and Christina!) I'm stuffed full of fun, memories and food. My friends and family have all called, sent or brought by gifts and I feel very loved. I have a big smile on my face! I'm grateful for my parents and miss them as they are up in heaven. I appreciate all their sacrifices for me and their great teachings. I wish I could hug them and thank my Mother for bringing me into this world.
I'm 56 years old and was born in '56. So that is special. Also, I was told that I wouldn't live longer than a year with cancer if I didn't do chemo. I was also told that if I did the strongest chemo in the hospital and bone marrow transplant twice that I may live 3 years...but not with good health. It's been 3 years and I feel great and am truly blessed with wonderful health. I'm so thankful to all my loved ones and for their prayers and money and faith in my behalf. Also, I am so grateful to my loving Heavenly Father and for His great mercy in extending my life and healing me...and for His guidance to Dr. Burzynski. :) :) :)

Adelaida Kay Van Meter

Adelaida Kay Van Meter (NPA)
6/13/10 - 2/29/12

We are very sad to report that we have received word of the death of little Adelaida Kay Van Meter, at the age of 20 months, due to Acid Sphingomyelinase Deficiency (ASMD), i.e., Niemann-Pick Disease Type A.

The daughter of Murro Van Meter and Sophia Fox of Massachusetts, "Adelaida loved everyone and everything," writes her mom. "She especially loved singing songs, baby dolls, reading books, and going on adventures. No one ever told Adelaida she wasn’t supposed to be the happiest little girl in the world! Her vibrant personality brought joy to the lives of her family and friends. Adelaida was an old soul. Words cannot express how she will be missed. There will be an enormous emptiness for a long time."

To read and see more about Adelaida's beautiful, too-short life, read the March 11 post at the Bourgeault family's blog, Kaitlyn's Korner. For more information about Niemann-Pick Disease Type A, visit www.nnpdf.org.

Our deepest sympathy goes out to Adelaida's family and friends in their loss.

NNPDF 20th Anniversary - 1992 - 2012

This year, the National Niemann-Pick Disease Foundation will mark 20 years of providing services to families affected by NPD, and raising awareness and funding for research into the causes and treatment of NPD.

Though we all wish there was no need for an organization dealing with the heartbreaking disease that is Niemann-Pick, the reality is, that until there are effective treatments and a cure, the need is great, and the NNPDF can be proud of all that it has achieved in the fight against NPD.

To learn more about the history of the NNPDF and the progress made since it was established, and how you can join in the recognition of this milestone, visit our special NNPDF 20th Anniversary page.

Edward H. Schuchman Research Fellowship - Request for Applications

The National Niemann-Pick Disease Foundation is pleased to announce a request for applications for the 2012 Edward H. Schuchman Research Fellowship, examining the biology of Acid Sphingomyelinase Deficiency (ASMD; i.e., Types A and B Niemann-Pick Disease).

M.D., Ph.D., and/or D.V.M. postdoctoral fellows are eligible to apply for funding to improve our understanding of the biology and pathogenesis of Acid Sphingomyelinase Deficiency (ASMD; i.e., Types A and B Niemann-Pick Disease).

Preference will be given to research projects developing new therapies for ASMD, and for identifying biomarkers to improve diagnosis or to monitor disease progression and efficacy in clinical trials.

The fellowship provides support of $40,000 per annum for two years and may be renewable based on performance. Applicants must be currently associated with a recognized laboratory.

These fellowships are named for Edward H. Schuchman, Ph.D. a pioneer in ASMD research, and supporter of the NNPDF.

Applications are due May 1, 2012, and the fellowship will begin September 1, 2012. Visit the NNPDF's Web site for more information and application procedures.

Terserah

Aku diam bukan karena aku setuju
Aku diam bukan karena aku tidak tahu apa-apa

Aku mengikuti alur kalian
Aku ingin tahu apa yang kalian lakukan selanjutnya
Dan sekali lagi, aku diam namun aku tahu maksud dibalik semua ini

Mungkin kalian berpikir rencana kalian berjalan mulus
Tapi tahukah kalian?
Aku tidak suka
Aku tidak mau
Aku pun tidak tahu apa yang harus kulakukan

Aku tidak ingin mulut ini menyakiti salah satu di antara kalian
Aku tidak ingin raga ini melakukan hal yang tidak ingin kulakukan

Sekarang, rasa kesal mulai muncul
Tidak tahu siapa yang harus disalahkan
Aku?
Atau kalian?

Dan sesungguhnya aku benci membaca kalimat yang telah kau tuliskan itu kawan..
Maaf...

Mulai dari sekarang, terserah kalian mau melakukan apa
Aku hanya akan menolaknya dengan halus
Atau mungkin dengan caraku sendiri
Dan terserah apa pendapat kalian

I'm totally screwed up!

-nothing's good about cucumber-