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Foundation Newsline and Updates
[Feb 17, 2010 mem] Life for Luke Gala
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The 9th Annual Life for Luka Gala is scheduled for Saturday, March 6, at 6:00 p.m., at the Riviera Parque Banquet and Convention Centre, Vaughan, Ontario. This event, held in memory of Luke Liegghio (NPC), will benefit the Canadian Chapter of the NNPDF and the Hospital for Sick Children. Scrumptious foods from around the world, superb service, and outstanding entertainment make for a spectacular evening not to be missed.
Singing sensation Daniel Panetta and comedian Frank Spadone will headline the evening's entertainment. Door prizes and one-of-a-kind silent and live auction items help ensure no one goes home empty-handed from this very special event.
Order tickets now for this spectacular evening of food, professional entertainment, dancing and silent auction deals.
For complete information, please visit our Life for Luke page, or the Life for Luke Foundation's Web site.
[Feb 10, 2010 mem]
Winter 2009 Newsletter
The NNPDF Winter 2009 newsletter is now available, full of all the latest news and information. Click here to read the newsletter online. The CCNNPDF's special insert is also available here. Paper copies of the newsletter are in the mail to all our member families and friends.
[Dec 15, 2009]
NPD Family Support and Medical Conference
August 5 - 8, 2010
Toronto, Ontario
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The 18th Annual Niemann-Pick Disease Family Support and Medical Conference will be hosted by the Canadian Chapter of the NNPDF (CCNNPDF) in the beautiful city of Toronto! The conference will be held August 5 - 8, 2010. For more details, please visit this page.
[Dec 2, 2009 mem]
Scentsy Fundraiser for Niemann-Pick Disease Research
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| Damon Cardinal (NPA) 12/26/06 - 4/16/08 |
Escential Consultant Janna Henke is hosting a "Scentsy Fundraiser for Niemann-Pick Disease Research" in memory of Damon Cardinal, son of Elsa and Delainy Cardinal of Edmonton, Alberta, Canada.
Scentsy offers unique wickless candles and specially designed ceramic warmers, using the heat of a light bulb rather than an open flame, to slowly melt the wax and release aromatic scents.
Elsa writes: "The products are amazing, and will make wonderful Christmas gifts for yourself or anyone you know. Twenty percent of the total product sales are being donated to CCNNPDF [the Canadian Chapter of the National Niemann-Pick Disease Foundation]!"
Scentsy products can be shipped and orders may be placed online by visiting Janna's Scentsy page. Thank you, Janna and Elsa!
[Dec 4, 2009 mem]
YouTube Video of "Our Kaiden" Raises Awareness of NPC
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| Kaiden St. Germain, age 3 |
Sharla St. Germain, mom to Kaiden, recently posted to YouTube a very educational video regarding Niemann-Pick Disease Type C. The video, set to music, features darling three-year-old Kaiden and his sister and brother and parents, as well as information about the disease and its diagnosis.
Click the link to view the video: http://www.youtube.com/watch?v=piJJJ9aB_Oc
Thank you, Sharla, for your continuing efforts to raise awareness of Niemann-Pick Disease!
[Nov 20, 2009 mem]
H1N1 Flu and Seasonal Flu Information and Resources
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Seasonal flu and the H1N1 flu are concerns on most everyone's minds. Families with members whose health is compromised by chronic illness should take special care to avoid contracting the flu. Sick Kids Hospital in Toronto provided us with this information for families with regard to H1N1 flu and vaccination: Q and A for Parents of Children with Chronic Medical Conditions |
Please visit the NNPDF's H1N1 and Seasonal Flu Information page for additional resources and official information about avoiding the flu, and for dealing with it should a member of your family contract it despite precautions. |
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[Nov 4, 2009 mem]
Kaiden St. Germain featured in Medicine Hat News
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| Kaiden St. Germain (NPC) |
Three-and-a-half-year-old Kaiden St. Germain's journey to a diagnosis of Niemann-Pick Type C was featured in a recent article in the Medicine Hat News. Click here and here to see the article, written by Tenille Tellman.
[Oct 28, 2009 mem]
October is National Niemann-Pick Disease Awareness Month!
Raising Awareness and Funding for Research
October has begun, the month designated as National Niemann-Pick Disease Awareness Month. This is the time when we make an extra push to educate the public, extended family and friends about Niemann-Pick Disease, the devastation it causes families, and the need for essential research.
For October 2009, the 8th Annual Niemann-Pick Disease Awareness Month, we are pulling out all the stops to raise awareness and funding which is so critically needed to ensure that one day, NPD will no longer be such a dire diagnosis. Check out the October Awareness page and the Current Fundraising Events page on the NNPDF Web site to see all that families around Canada and the U.S. are doing to raise awareness and funds.
The NNPDF is busily supporting these families in their efforts, and we would like to encourage everyone to consider doing something in their local community to raise awareness. This can be as simple as sending a press release (which we can help you write or edit), or asking your local city officials to proclaim October as NPD Awareness Month (we have samples and can help you do this, as well). If you are more ambitious, it's not too late to launch a fundraising event. Check out the pages linked above for some great ideas, from the most simple to the more complex.
Thank you for all you are doing this month, and all year through, to help us raise awareness and funds for our all-important Quest for a Cure!
[Oct 7, 2009 mem]
NNPDF Representatives to Attend First International Conference on Niemann-Pick Disease
The first International Conference on Niemann-Pick Disease is being held October 8 - 11, in Scotland, co-sponsored by the NNPDF and the NPD Group (UK). The purpose of this conference is to enhance communication and representation among the organizations supporting those with NPD around the world.
Collaboration will help maximize efforts and avoid duplication of work, in good stewardship of hard-earned resources. This conference marks an important step in global collaboration and cooperation in the fight against NPD.
The NNPDF and CC-NNPDF will be represented by: Barb Vorpahl, NNPDF Board Chair; Karen Quandt, NNPDF Vice Chair; Tammy Vaughan, NNPDF Secretary and CC-NNPDF Chair; Lucy Liegghio, CC-NNPDF Vice Chair; and Nadine Hill, NNPDF Director of Family Services.
Thanks to Actelion for financial support!
[Oct 7, 2009 mem]
Minde-Redcrow Family and Friends Letter, Jewelry Party, etc.
Tessa Minde and Warren Redcrow of Hobbema, Alberta, Canada, parents of 15-month-old Tehyez Minde (NPA), are sending out Family and Friends letters during October to raise awareness and funds to help fight NPD.
A friend of Tessa's also hosted a 5th Avenue Jewelry Party at her workplace, and as the hostess, she was entitled to 15% of the profit, which she donated in honor of Tehyez.
The school where Tessa works is planning to do a fundraiser, as well, and Tessa is in contact with a local newspaper about doing a feature story on Tehyez and Niemann-Pick Disease.
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Tehyez Minde (NPA) |
[Oct 7, 2009 mem]
Cardinal Family and Friends Letter, Mayor's Proclamation, and Persevere Items Sales
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Damon Cardinal (NPA) 12/26/06 - 4/16/08 |
Elsa and Delainy Cardinal of Alberta, Canada, will again mark October Awareness Month with a Family and Friends Letter in memory of their son, Damon Eli Cardinal. Sixteen-month-old Damon lost his battle with Niemann-Pick Type A in 2008.
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| Renee and Alexis, raising money and awareness for NPD |
Alexis Cardinal, sister to Damon, and her friend, Renee, set out to raise $100 in memory of Damon, going door to door handing out brochures, sharing about Damon, and collecting donations from the sale of Persevere water bottles and wristbands.
Proud mom, Elsa Cardinal writes, "Although they were discouraged at first with a lot of 'no's' they PERSEVERED and raised over $40 within an hour. Both girls were smiling proudly and since then another friend has joined them to try and sell the last items they have in their bag. Alexis and my 2 oldest boys are also looking forward to handing the letters I ordered to their classmates on Friday. Alexis plans to take water bottles to school as well and ask for donations from her classmates to help her fulfill her goal."
Further, the Cardinals, together with Tessa Minde and Warren Redcrow (parents of 15-month-old Tehyez, NPA) requested Edmonton, Alberta Mayor Stephen Mandel, to proclaim October as Niemann-Pick Disease Awareness Month in the city. See the proclamation here.
[Sept 30, 2009 mem]
St. Germain Family and Friends Letter
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Kaiden St. Germain |
Sharla St. Germain is sending out a Friends and Family Letter in honor of her son, Kaiden St. Germain. Kaiden is still undergoing testing in what has been a difficult diagnostic process.
[Sept 25, 2009 mem]
Hudson - Cardinal Wedding
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| The Cardinal Family |
Elsa and Delainy Cardinal |
Damon Eli Cardinal (NPA) 12/26/06 - 4/16/08 |
Elsa Hudson and Delainy Cardinal recently married, with wedding photos taken by Jenny Alston of Imajen Portrait Art. Jenny donated her photography fee to the Canadian Chapter of the NNPDF in memory of the Cardinal's son, Damon Cardinal. Damon passed away at the age of 16 months, in April of 2008, from Niemann-Pick Disease Type A.
Congratulations to the Cardinal family, and Thank You to Jenny Alston for supporting NPD research and support services for families like the Cardinals!
[Sept 23, 2009 mem]
2010 NNPDF Family Support and Medical Conference to be held in Toronto
Hello NNPDF Families and Friends,
It is official ~ the 18th Annual NNPDF Family Support and Medical Conference to be hosted by our good friends to the north,
the Canadian Chapter of the NNPDF, will be held in the beautiful city of Toronto, Ontario, Canada.
To see and learn more about all that this wonderful destination has to offer, please visit the "See Toronto Now" web site:
http://www.seetorontonow.com/
The families of Tammy & Alan Vaughan and Lucy & Enio Liegghio, of the CC ~ NNPDF, have graciously stepped forward
to co-host this event in memory of their precious children: Alex Vaughan (NPC ~ 04/18/88-12/23/92), Laura
Vaughan (NPC ~ 1/16/95-11/8/01), and Luke Liegghio (NPC ~ 5/5/97-6/10/05).
The Vaughans & Liegghios will work hand-in-hand with the Family Conference Committee of the NNPDF to develop a
meeting that will best meet the interests and needs of our family membership. The planning for this event has begun in
earnest and we will forward information on a firm date and location announcement for the conference as soon as possible.
For those who like to get their family calendars in line early on ~ please pencil in late July 2010 and/or early August 2010
as the most likely date options for this event.
We wanted to share the excitement over this Family Conference location site choice with all of our families and members
so that you too can join in the fun and begin planning your family trip for next summer!
In the interim, you may wish to visit our NNPDF Web site to view updates from the wonderfully successful 2009 17th Annual
NNPDF Family Support and Medical Conference which was just held in Seattle, Washington, hosted by the family of Karen &
Gene Quandt, in honor of their son, Ty (Age 12, NPC). http://www.nnpdf.org/familyservices_03.html
This link includes two fun slide-show recaps and a link to the memorial video from this event. We are also working on
fine-tuning speaker recaps summaries and PowerPoint presentations so that we can post this information for all of our
members who weren't able to travel to Seattle and attend the conference in person.
Great thanks go out to the families who continue to step-up and assist the foundation with the planning of the annual
conferences ~ it is so greatly appreciated.
Kind Regards,
Nadine
[Sept 10, 2009 mem]
"In the News"
Updates on OrphaNews
Newsletter of the Rare Diseases Task Force
Visit OrphaNews Europe to read the following updates:
National and International Policy Developments: A Canadian province adopts rare disease drug evaluation programme.
Ethical, Legal and Social Issues: An international expert group reiterates the need to adhere to guidelines for stem cell clinical applications.
[July 13, 2009 mem]
7th Annual Alex and Laura Vaughan Memorial Golf Tournament
Saturday, June 20, 2009
Stone Tree Golf Club, Owen Sound, Ontario, Canada
11:00 a.m.
Alex Vaughan, NPC Laura Vaughan, NPC
4/18/88 - 12/23/92 1/16/95 -11/8/01
This golf tournament will be 4-person teams, Best Ball format. The $100 fee incudes 18 holes of golf, power cart and dinner, along with a chance to win exciting prizes. Hole sponsors, raffle prize donations and monetary donations are also being solicited in support of this event. Proceeds will benefit the Canadian Chapter of the National Niemann-Pick Disease Foundation.
Click here for more information, including a registration form and sponsorship/donation form.
A note from Tammy Vaughan, mother of Alex and Laura, and Chair of the Canadian Chapter of the NNPDF, about the 2009 Vaughan Memorial Golf Tournament:
Thanks to our friends, family, and the generous businesses throughout Canada and the US, we will be contributing another $24,000 to research to find a treatment and cure for Niemann-Pick Disease. This brings our 7 year total to over $159,000!
Every year I am literally overwhelmed by the amazing support that we receive – you guys are simply the best – what more can we say but THANK YOU, THANK YOU, THANK YOU.
The rain poured right up until tee-off time, but our little angels were looking out for us and the rain stopped at 10:55 am - leaving us dry for the remainder of the day. From what I have heard rain surrounded the area so I think that Stone Tree actually got some special treatment!
Once again, thank you from the bottom of hearts for your support and your generous contributions to this cause that is so important to us.
See you next year on the 19th of June!
Allan, Tammy and Michael
Look to this day
For yesterday is but a dream,
And tomorrow merely a vision.
But today, well lived,
Makes every yesterday a dream of happiness
And every tomorrow a vision of hope.
Look well, therefore, to this day
[June 22, 2009 mem]
Save the Dates!
NNPDF 17th Annual Family Support and Medical Conference
July 30 - Aug 2, 2009
Seattle,Washington
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The NNPDF's 17th Annual Family Support and Medical Conference is being planned for July 30 - August 2, 2009. The conference will be held in Seattle, Washington, at the Doubletree Guest Suites. We recommend you make your hotel reservations as soon as possible! Use the link to book your room as part of the NNPDF reserved block. We hope you will join us to learn the latest in research and treatments, and to build your support network and friendships with other families affected by Niemann-Pick Disease! Member families -- conference registration packets have been mailed out. You can also view the packet at the following link, along with airline info, etc. Please return your conference registrations by July 1st. |
[May 19, 2009 mem]
Update from Tammy Vaughan, CCNNPDF Chair, March 2009
CTV Calgary Television News Coverage
Who Inspires U?
Mariarosa Martino and her friend, Marchella Mafrica, garnered television coverage via a Calgary news program. Mariarosa has NPD Type B and is a strong supporter of the Canadian Chapter of the National Niemann-Pick Disease Foundation. Click the link below to read the story and to see the news video.
(The link to the video is in the center of the page titled: “Sage Pullen talks to a young woman with a rare disease.”)
Also, Mariarosa’s friend Marchella entered a video contest, "Who Inspires U?" Her video about their lifelong friendship made the top 20!
Thank you to these two young women who are certainly an inspiration to us all in their ongoing friendship and support of one another.
[May 19, 2009 mem]
Latest Research Highlights from the National Niemann-Pick Disease Foundation Research Committee Chair, Susan Green, and our Scientific Advisory Board Chair, Dr. Dan Ory, MD.
The latest research from the NNPDF ~ First Quarter 2009
[March 9, 2009 nmh]
National Niemann-Pick Disease Foundation
Peter G. Pentchev Research Fellowship
Request for Applications Issued
The National Niemann-Pick Disease Foundation (NNPDF) invites applications for postdoctoral research fellowships examining the biology of Niemann-Pick Type C (NPC) disease, a lethal neurodegenerative disease for which there are no effective therapies.
M.D., M.D.-Ph.D., and Ph. D. postdoctoral fellows are eligible to apply for funding to improve our understanding of the biology and pathogenesis of NPC disease. Preference will be given to research projects developing new therapies for NPC and identifying biomarkers of disease activity for diagnosis and clinical trials.
The fellowships provide support of $50,000 per annum for two years and may be renewable based on performance. Applicants must be currently associated with a recognized laboratory.
Applications are due May 1, 2009, and should be submitted by email to the Research Committee Chair.
Click here for application procedures.
Applicants will be informed of the funding decision by August 15, 2009, via email.
Two fellowships will be awarded to begin September 1, 2009.
For further information please contact the Research Committee Chair.
Click here for a printable flyer regarding the Peter G. Pentchev Research Fellowships.
[March 3, 2009 mem]
Niemann-Pick Disease in the National News
Dillon Papier (NPC)
Niemann-Pick Disease was the subject of a CBS News segment which aired in the United States on March 1st, featuring the Papier family of Frederick, Maryland.
Mark and Darrile Papier are the parents of Dillon, age 6, who is affected by Niemann-Pick Type C. The Papiers are members of the NNPDF, and Darrile recently joined the Foundation’s Board of Directors.
To view the segment, visit: http://www.cbsnews.com/video/watch/?id=4836925n&tag=main_home_MediaBox.
Please view the link, post your comments, and forward the link to your family and friends. Our goal is to make Dillon’s segment the most-viewed story on the CBS Web site.
If enough interest is shown in the segment, perhaps CBS will do a more in-depth story and help raise awareness of our quest for a cure!
[March 3, 2009 mem]
Expression of Hope is a global program featuring works of art by the community touched by lysosomal storage disorders (LSDs). Our vision is that those who experience this art will be inspired and moved by the powerful expressions of human spirit which the pieces will reveal. People living with LSDs, or caregivers around the world, are invited to submit artwork which shares their feelings of hope and expresses their innermost essence.
www.expressionofhope.com
022409 ~ nmh
Regions of Canada are adopting strategies for reimbursing medicinal products for rare diseases
The province of Alberta, Canada, last month announced a programme for rare disease pharmaceutical products. The Alberta Rare Diseases Drug Program is a new initiative that will reimburse Alberta residents for their rare disease treatments. The scheme requires users to pay premiums and “make co-payments consistent with their government-sponsored drug coverage”. The diseases currently eligible for coverage include Gaucher disease, Fabry Disease, MPS-I (Hurler/Hurler Scheie), Hunter syndrome and Pompe disease – all of which have treatments costing between C$250,000 - C$1million (€156,440 - €625,600) per year. The programme is expected to get underway in April 2009.
020109 ~ nmh
The Canadian Chapter of the National Niemann-Pick Disease Foundation (CCNNPDF) does not engage in the practice of medicine. It is not a medical authority nor does it claim to have medical knowledge. This site is an educational service of the Canadian Chapter of the National Niemann-Pick Disease Foundation and is not meant to provide diagnostic or treatment advice. Information contained or suggested on this Web site does not constitute medical advice. For all information related to care, medication or treatment, the CC ~ NNPDF recommends consulting a physician to determine if information presented is applicable. Please review these additional cautions about medical information provided on the Internet.