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April 2016 Newsletter

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APRIL 2016
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2016 Board of Directors2 BORDERS
2016 NNPDF Board of Directors, Committee Members and Central Office Staff

FRONT ROW (From Left) ~ Rhonda Brown-Kehoe, Margo Frey, Anne O’Connor-Smith, Nicole Farhat, Missy Ward, Nadine Hill (NNPDF Executive Director) BACK ROW ~ Chris Klauer (NNPDF Family Services and Marketing Coordinator), Lisa Chavez, Elissa Miller, Justin Hopkin, Wayne Palmiter, Leslie Hughes, Tammy Vaughan Not pictured: Jill Flinton

Members of the NNPDF Board of Directors serve in a volunteer capacity, without remuneration for their work but with a deep desire to focus their efforts towards assisting others facing the unimaginable ~ the diagnosis of NPD in their family. Most NNPDF Board Members have loved ones who are affected by Niemann-Pick Disease, whether children, grandchildren, cousins, while others are affected personally. Thus, they are highly motivated to see effective treatments and a cure become a reality as soon as possible, and they are dedicated to maximizing the use of the foundation’s resources for the benefit of all affected by this devastating disease.

Under the foundations existing By-laws, members of the Board of Director’s may serve up to six years on the board (two 3 year back-to-back terms) before they must take a mandatory one-year leave from their role as a member of the Board of Directors. The NNPDF adopted this policy in 2006 in an attempt to ensure that the foundation continued to seek out new board members who would bring in varying levels of expertise and professional backgrounds with which to assist the board in meeting the every-changing needs of our patient community. With that policy in place, for 2016 we bid a fond farewell to three board members who have served the foundation in varying capacities in the past and to whom we owe a deep sense of gratitude and thanks for the care and service.

thankyou snippet APRIL2016

welcome snippet APRIL2016

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2016ConferenceBANNER_002

The National Niemann-Pick Disease Foundation is thrilled to announce that the 24th Annual Family Support and Medical Conference will be held in Boston, MA. The family oriented Doubletree Boston North Shore situated a mere 19 minutes from downtown Boston, Logan International Airport and a short drive from Salem, MA ~ is an ideal location site for our annual event.

The Doubletree Boston hotel boasts the CoCo Key Waterpark, which is one of the largest indoor waterparks in New England! Just what the kids ordered! Others will enjoy the Atlantis Sports Club & Spa which features a full gym plus an indoor pool and spa.

In Boston, you’ll find exciting waterfront & harbor activities, captivating museums for the entire family, charming boutiques and romantic restaurants. Discover Boston’s picturesque and historic neighborhoods via a walking tour, travel to Salem to learn about all “The Salem Witch Trials” or tour a wide-range of attractions which the area boasts. There is simply so much to see and do in the Greater Boston area ~ start planning your trip via the Greater Boston CVB now at: www.bostonusa.com.

This annual meeting offers an unmatched opportunity for families and patients to learn of the latest NPD research and scientific breakthroughs directly from key specialists in the NPD field. Not only are attendees able to immerse themselves in the research and medical/clinical updates afforded them throughout the weekend but they are able to spend time and connect with other families experiencing similar challenges.

Mark your calendar with the dates of August 11 thru 14, 2016 and plan to join us where we will all be “Staying STRONG in Boston!” More conference details and registration information will be posted via the NNPDF web site as they developed at: www.nnpdf.org. As always, please feel free to call us at the NNPDF Central Office: 1-877-287-3672, we would love to hear from you.

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2016 ~ NNPDF Research Fellowships
Request for Applications (RFA’s) ~ 2016

The National Niemann-Pick Disease Foundation (NNPDF) is pleased to announce that, due to the diligent efforts of our family membership and their fund raising successes, the NNPDF will again be funding NEW research projects benefitting NPD.

For 2016, the NNPDF invites applications for research fellowships examining the biology of Niemann-Pick Type C (NPC ~ Peter G. Pentchev Fellowship) disease, a lethal, neurodegenerative disease. In addition, we are pleased to notify the community that we welcome fellowship applicants examining the biology of Acid Sphingomyelinase Deficiency (ASMD, ie: NPD Types A & B ~ Edward H. Schuchman Fellowship), a rare inherited lysosomal storage disease.

At this time, the members of the board of the National Niemann-Pick Disease Foundation are pleased to post a “call out” for “Requests for Application in 2016 addressing the following types of NPC & ASMD (NPD Types A & B) Fellowships.

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~ APPLICATIONS DUE MAY 15th, 2016 ~

Application Process ~ Peter G. Pentchev Fellowship
Research Fellowship for the Study of NPC

• Peter G. Pentchev Research Fellowship – General Information
• Peter G. Pentchev Research Fellowship – Application
• 2016 Peter G. Pentchev Research Fellowship ~ Call for Applications Flyer

Please submit by email to the Research Committee Secretary.

Information regarding application procedures is below.
Applications are due May 15th, 2016.
Applicants will be informed of the funding decision by September 1st, 2016, via email.
Fellowships awarded will begin on or near October 1st, 2016.

Printable Flyer/Poster about the Peter G. Pentchev Research Fellowship

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~ APPLICATIONS DUE MAY 15th, 2016 ~

Application Process ~ Edward H. Schuchman Fellowship
Research Fellowship for the Study of ASMD
(Types A and B Niemann-Pick Disease)

• Edward H. Schuchman Research Fellowship – General Information
• Edward H. Schuchman Research Fellowship – Application
• 2016 Edward H. Schuchman Research Fellowship ~ Call for Applications Flyer

Please submit by email to the Research Committee Secretary.

Information regarding application procedures is below.
Applications are due May 15th, 2016.
Applicants will be informed of the funding decision by September 1st, 2016, via email.
Fellowships awarded will begin on or near October 1st, 2016.

Printable Flyer/Poster about the Edward H. Schuchman Research Fellowship

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To learn more about the NNPDF research funding strategy
please follow this link.

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It would be so terrific if you could be with us for the Ara Parseghian Medical Research Foundation Annual meeting in Tucson, June 4-6, 2016 at the Westin La Paloma Hotel.

Dear Friends,
We are extending the abstract submission date to Friday, April 22, 2016; abstracts can be simply emailed to Kim Kirkpatrick at kkirkpa4@nd.edu.

If you have not done so already, please register for the meeting at the following website:
https://notredame-web.ungerboeck.com

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GENZYME

From David and Jennifer about their daughter Kaila: Our daughter Kaila, 8 years old, became the first pediatric patient in the US to receive the treatment today. She is doing well and is in good spirits. We are thinking of all of you and hopefully soon a treatment will be available to everyone

ORPHAZYME

Orphazyme has provided the NNPDF Central Office with an update on the AIDNPC Clinical Programme (arimoclomol in treatment of NPC). Please go to nnpdf.org/Orphazyme.html to read updates from November 2015, January 2016 and March 2016.

VTESSE

Vtesse has released a video to help caregivers and patients decide if the VTS-270 Clinical Trial is right for them. You can view it at thenpcstudy.com. There is also additional information that you can access about the NPC Study.

To access regular updates, as well as,
a historical recap tied to each clinical trial ~ please refer
to the specific NNPDF web page dedicated to each trial.

GENZYME/nnpdf.org/npresearch_11.html

ORPHAZYME/nnpdf.org/Orphazyme.html

VTESSE/nnpdf.org/Vtesse.html

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Did you miss the previous issue of the NNPDF E-Newsletter?

Recall an interesting article from previous
E-Newsletters that you need easy access to?

All past NNPDF E-Newsletters
along with a topic index are maintained here.

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National Niemann-Pick Disease Foundation

PO Box 49, Fort Atkinson, WI 53538-0049
Phone: 920-563-0930 | Toll Free: 877-287-3672
www.nnpdf.org | nnpdf@nnpdf.org

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The National Niemann-Pick Disease Foundation (NNPDF) 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 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 NNPDF recommends consulting a physician to determine if information presented is applicable. Please review these additional cautions about medical information provided on the Internet. This newsletter is a service of the National Niemann-Pick Disease Foundation’s Family Services Program, made possible by the financial support of our member families and other generous donors and grantors. The NNPDF receives no government funding, nor does it host or receive funding from advertising or from the display of commercial content.

The National Niemann-Pick Disease Foundation is a 501(c)(3) organization. Your donations are fully tax-deductible.