Tuesday, August 17, 2010
Friday, August 13, 2010
Princess Monica Celebrates First Birthday!
The 18th Annual National Niemann-Pick Disease Family Support and Medical Conference was held August 5th through 8th, in Toronto, Canada.
One of many highlights of the conference was the "Princess Party" held in honor of the first birthday of Monica Taillefer, daughter of Heather Patenaude-Taillefer and Simon Taillefer of Quebec.
The party was complete with a tiara for Princess Monica, crowns for all the kids, cake, of course, and special appearances by Cinderella and Snow White.
For more conference details and a link to see dozens of great photos from the event, visit the NNPDF NewsLine page.
One of many highlights of the conference was the "Princess Party" held in honor of the first birthday of Monica Taillefer, daughter of Heather Patenaude-Taillefer and Simon Taillefer of Quebec.
The party was complete with a tiara for Princess Monica, crowns for all the kids, cake, of course, and special appearances by Cinderella and Snow White.
For more conference details and a link to see dozens of great photos from the event, visit the NNPDF NewsLine page.
Friday, July 9, 2010
Promising Therapies for NPC
"Promising Therapies for Niemann-Pick Type C Disease"
NINDS Meeting
June 2010
We have had quite a bit of discussion on our listserv pertaining to the recent research and treatment options for Niemann-Pick Type C (NPC) Disease.
To provide some background and insight for these continuing discussions, we have compiled a summary of the presentation abstracts from the "Promising Therapies for Niemann-Pick Type C Disease" meeting sponsored by the National Institute of Neurological Disorders in Rockville, Maryland, June 3-4.
NINDS Meeting
June 2010
We have had quite a bit of discussion on our listserv pertaining to the recent research and treatment options for Niemann-Pick Type C (NPC) Disease.
To provide some background and insight for these continuing discussions, we have compiled a summary of the presentation abstracts from the "Promising Therapies for Niemann-Pick Type C Disease" meeting sponsored by the National Institute of Neurological Disorders in Rockville, Maryland, June 3-4.
Visit the NNPDF's Latest Research page to read the presentation abstracts from this important conference.
Thursday, July 1, 2010
Emily Jane Hrbacek
Emily Jane Hrbacek
July 15, 1999 - July 1, 2010
It is with great sadness that we pass along word of the loss of Emily Jane Hrbacek due to Niemann-Pick Disease Type C. The beloved daughter of Scott and Laura Hrbacek of Eureka, Missouri, Emily was just shy of her 11th birthday.
We received this message from Emily's family:
Our deepest sympathy to Emily's parents, family and many friends.
July 15, 1999 - July 1, 2010
It is with great sadness that we pass along word of the loss of Emily Jane Hrbacek due to Niemann-Pick Disease Type C. The beloved daughter of Scott and Laura Hrbacek of Eureka, Missouri, Emily was just shy of her 11th birthday.
We received this message from Emily's family:
This morning Emily passed away peacefully and is no longer suffering. Emily passed from the complications of Niemann-Pick Disease. Emily put up a long fight but in the end now the fight is over. Emily had the most beautiful eyes and a smile that melted everyone's heart. Emily was the best child that God could have given us and she will be missed by many. God bless our angel.A visitation will be held at Most Sacred Heart Church, 350 East Fourth Street, Eureka, on Sunday, July 4th, from 3:00 - 8:00 p.m. Funeral mass will be at 10:00 a.m. on Monday, July 5th, also at Most Sacred Heart, with burial at Holy Cross Cemetery.
Our deepest sympathy to Emily's parents, family and many friends.
To learn more about Niemann-Pick Disease, visit the National Niemann-Pick Disease Foundation (NNPDF) Web site.
Wednesday, June 30, 2010
NNPDF Announcement
A message from NNPDF Board Chair Karen Quandt:
Cate Walsh Vockley, the National Niemann-Pick Disease Foundation’s Coordinator of Education, Referral and Advocacy, has resigned her position with the NNPDF as of June 30, 2010. The NNPDF Board of Directors and the Central Office will be addressing all inquiries to assist our family membership and work to ensure that there is no interruption of family support, referrals and services. Please contact the Central Office at 1-877-287-3672 or email nnpdf@nnpdf.org.
Cate has been a passionate advocate at the NNPDF for the patients and families affected by all types of Niemann-Pick Disease for the past six years. She has been an integral part of our family support services and has helped many families navigate through the uncharted emotional and medical maze that goes along with a rare disease. We will miss her and we wish her well in all her future endeavors.
Thank you, Cate, for your dedicated service to help make the foundation a strong and reliable place for families to seek assistance and advice in our quest to care for our family members and to find a treatment or cure for Niemann-Pick Disease.
Karen Quandt
NNPDF Chair
Cate's message to the membership of the NNPDF:
Dear NNPDF Friends,
My contract with the Foundation will end as of June 30, 2010. I have enjoyed my work with the Foundation and especially with the many families with whom I have interacted over the years. Dealing as we have, with the many sensitive issues that affect families of those with chronic, debilitating conditions, has created connections that will stay with me forever.
I will continue to support the goals and mission of the Foundation, and pray that the effective treatment and cure you seek will come soon. I will be continuing my work in the field of rare disease recognition and therapeutics, but with a different focus for now. I do hope to see some of you in the future, at meetings or gatherings that support common goals.
I wish you all the best!
Kind regards,
Cate
Cate Walsh Vockley, MS, CGC
Senior Genetic Counselor
Division of Medical Genetics
Children's Hospital of Pittsburgh
One Children's Hospital Drive
4401 Penn Avenue
Pittsburgh, PA 15224
Tele: 412-692-7349
Fax: 412-692-7073
catherine.walshvockley@chp.edu
Any questions or inquiries may be directed to the NNPDF Central Office.
Cate Walsh Vockley, the National Niemann-Pick Disease Foundation’s Coordinator of Education, Referral and Advocacy, has resigned her position with the NNPDF as of June 30, 2010. The NNPDF Board of Directors and the Central Office will be addressing all inquiries to assist our family membership and work to ensure that there is no interruption of family support, referrals and services. Please contact the Central Office at 1-877-287-3672 or email nnpdf@nnpdf.org.
Cate has been a passionate advocate at the NNPDF for the patients and families affected by all types of Niemann-Pick Disease for the past six years. She has been an integral part of our family support services and has helped many families navigate through the uncharted emotional and medical maze that goes along with a rare disease. We will miss her and we wish her well in all her future endeavors.
Thank you, Cate, for your dedicated service to help make the foundation a strong and reliable place for families to seek assistance and advice in our quest to care for our family members and to find a treatment or cure for Niemann-Pick Disease.
Karen Quandt
NNPDF Chair
Cate's message to the membership of the NNPDF:
Dear NNPDF Friends,
My contract with the Foundation will end as of June 30, 2010. I have enjoyed my work with the Foundation and especially with the many families with whom I have interacted over the years. Dealing as we have, with the many sensitive issues that affect families of those with chronic, debilitating conditions, has created connections that will stay with me forever.
I will continue to support the goals and mission of the Foundation, and pray that the effective treatment and cure you seek will come soon. I will be continuing my work in the field of rare disease recognition and therapeutics, but with a different focus for now. I do hope to see some of you in the future, at meetings or gatherings that support common goals.
I wish you all the best!
Kind regards,
Cate
Cate Walsh Vockley, MS, CGC
Senior Genetic Counselor
Division of Medical Genetics
Children's Hospital of Pittsburgh
One Children's Hospital Drive
4401 Penn Avenue
Pittsburgh, PA 15224
Tele: 412-692-7349
Fax: 412-692-7073
catherine.walshvockley@chp.edu
Any questions or inquiries may be directed to the NNPDF Central Office.
Friday, June 18, 2010
Brooke Lynn Thomas
Brooke Lynn Thomas
March 5, 2001 - June 16, 2010
With very heavy hearts, we inform you of the passing of little Brooke Thomas, 9-year-old daughter of D.J. and Vicki Thomas of Blair, Nebraska.
Despite the challenges of Niemann-Pick Disease Type C, Brooke was able to complete the school year. She subsequently developed a case of pneumonia which she was unable to overcome.
Despite their heartbreaking loss, the family is taking comfort in the knowledge that prior to her unexpected death, Brooke was a happy, carefree and engaged little girl who enjoyed life.
A visitation and celebration of Brooke's life will be held on Sunday and Monday, June 20 and 21. Please visit the NNPDF NewsLine page for more details.
Our deepest sympathy goes out to Brooke's family and friends in their loss.
Thursday, June 17, 2010
NNPDF Families Working to Raise Awareness and Find a Cure
The summer fundraising season is upon us, and many NNPDF families are pulling out all the stops to raise awareness and funds for the fight against Niemann-Pick Disease.
Of course, many of our families do fundraising year-round, but the warmer weather lends itself to many types of outdoor fundraisers that bring out the crowds looking for something fun to do while supporting a worthy cause.
This Saturday, June 19, golfers will compete in the Alex and Laura Vaughan Memorial Golf Tournament in Durham, Ontario, to benefit the Canadian Chapter of the NNPDF. Next Friday, June 25, an Evening of Jazz in Vaughan, Ontario, will benefit the Life for Luke (Liegghio) Foundation.
The weekend of June 26-27 will see four events benefitting the NNPDF. Saturday, June 26, is the date for this year's Hanover (Massachusetts) 5K Road Race in memory of Erin Roberts, as well as the Golf "FORE" Stacey (Vorpahl) Memorial Classic event in Cold Spring, Wisconsin.
On Sunday, June 27, the Perugini family will host the Marcello and Matthew Perugini Memorial Walk (Waterbury, Connecticut), and Annie OConnor-Smith's husband, Mike, will compete in the Ironman Triathlon in Coeur d'Alene, Idaho.
Thank you to all our NNPDF families, friends and supporters, who organize, donate and participate in these events to raise funding for essential research and to provide all-important family support services!
More events are scheduled around the nation for the coming weeks. Visit the NNPDF Web site's Upcoming Events page for all the details.
One final note -- as many are celebrating graduations around the country, the Naugatuck, Connecticut, High School lovingly dedicated their 2010 yearbook to the memory of Bryanna DeSouza (NPC), who would have graduated this year. Visit the NNPDF's Recent Events page for the complete posting.
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