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April 2015 eNewsletter

APRIL 2015



Dear Friends and Families,

The National Niemann-Pick Disease Foundation is pleased to invite you to the 23rd Annual NNPDF Family Support and Medical Conference in Chicago, Illinois ~ Town of Rosemont, Thursday, August 6 ~ Sunday, August 9, 2015, at Loews Chicago O’Hare Hotel. Please mark your calendar and make plans now to join us for this informative family support and medical conference!

When one thinks of Chicago, it conjures up the familiar term “Windy City”. The winds off of Lake Michigan can be strong and a force to contend with at times. With that in mind, our conference theme of:

“The Winds of Hope are on the Horizon….for our NPD Community”

allows us to engage Chicago as the perfect location site for our 23rd Annual NNPDF Family Support and Medical Conference. The strong and relentless winds in Chicago are indicative of the strength and hope that our NNPDF families show as they fight against NPD on behalf of their loved ones.

The family conference offers all in attendance an unmatched opportunity to learn about the latest scientific & research news and information directly from the TOP experts in the field of Niemann-Pick Disease (NPD) research, medical care and clinical trials.  In addition, our attendees have an opportunity to network with other families who share similar challenges as they journey on with loved ones diagnosed with Niemann-Pick Disease. The NNPDF Central Offices have been focused in our efforts to further identify an appropriate hotel location site and conference registration materials that will assist all in towards ensuring that this conference date is worked into your summer family plans. 

Again, for 2015, we are pleased to provide our families with an easy online registration form, helping hand stipend application and hotel registration support ~ all online for quick and easy access!

Below are the links to register online at the Loews Chicago O’Hare Hotel and to ensure that you obtain the special NNPDF conference contracted rate of $109.00 per night.  In addition, you may complete your family conference registration and helping hand stipend applications online via the QuickLinks below as well.

Book your room at the Loews Chicago O’Hare Hotel Online

Online NNPDF Registration and Helping Hand Stipend Form

PLEASE NOTE: When registering online for the conference you will need to identify registrants based on the fee that is paid.  So if you are a family of 4 (2 adults, 1 child and one NPD-affected individual) make sure to use the drop downs for all four of those tickets (ie:  attendees). If you are interested in applying for a “NNPDF Helping Hand Stipend” (financial assistance for our foundation NPD immediate family & patients) please be certain to enter a “1” under the option title:  Request a Helping Hand Stipend ~ before you check out.

You do have the option to pay for your conference registration fees via credit card upfront or to mail a personal check for your registration fees directly to the NNPDF Central Offices.  We ask that if you do pay by check that you make sure to submit your payment by the registration deadline of June 30th, 2015.  If you need any assistance at all ~ please feel free to contact the office at nnpdf@nnpdf.org or 877-287-3672.

ITEMS TO NOTE:

  • Be Thorough: You’ll notice that information is being requested for each ticket you are purchasing, regardless of the fee.  This is information we do require for each individual attendee, so please be as thorough as you can with your registration form.  If something is not applicable to you and is not required, you can leave it blank.  You will also receive a family conference packet in the mail which will provide you with a hard-copy registration form and Helping Hand Stipend.
  • Please make use of the “First Time Attendee?” question.  It’s an easy way to let us know to create a first time attendee badge for you as well as pair you up with a mentor during the conference. We have found that this helps to ease the transition for our “First Time Attendees” to ensure that you are able to get the most out of your attendance at the conference and the information presented.
  • Let us know the meals you will be attending with us!  You’ll notice each person is asked if they will be in attendance for specific meals throughout the conference.  This information assists us with our meal head-counts for accuracy.  Please complete so that we know you won’t be in attendance for certain events and/or are planning to dine out instead.  Thank you.
  • Don’t have your hotel information yet?  No worries.  Fill it out to the best of your abilities and e-mail nnpdf@nnpdf.org with your hotel information once you get it.  We can update your registration on our side with no issues.
  • Keep an eye on your mailboxes as well, as the Family Conference Registration Packet will be forwarded along to our membership shortly with more travel and conference information.

Here are some important dates to keep in mind when registering for the Family Conference, as well as the tentative weekend conference “Agenda at a Glance” so you can begin planning your trip accordingly.


Important Dates and Deadlines

When: Thursday, August 6 – Sunday, August 9, 2015

Conference Registration deadline:  June 30, 2015 

Helping Hand Stipend Application deadline:  June 30, 2015 

First Time Family Fundraiser deadline:  June 30, 2015

Hotel Reservation deadline:  July 15, 2015 or when the block is booked, whatever comes first.

If you should have any troubles with registering or have any questions about the family conference you can feel free to contact the Family Services and Marketing Coordinator, Chris, anytime at 920-563-0930 or e-mail her at nnpdf@nnpdf.org.  

We can’t wait to see you all in beautiful Chicago in just a few short months!

For additional information on the 2015 NNPDF Family Conference, visit the 2015 Family Conference page on the NNPDF web site!


Welcome ~ New NNPDF Board Members and Staff

2014 – 2015 NNPDF Board of Directors, Committee Members, and Central Office Staff (from left): Front row – Sandra Cowie, Jill Flinton, Nadine Hill (NNPDF Executive Director), Lisa Chavez, Elissa Miller, Second row – Wayne Palmiter, Tammy Vaughan, Heather Patenaude, Anne O’Connor-Smith, Leslie Hughes, Nicole Farhat-Yanjanain, Rhonda Brown-Kehoe, Chris Klauer (NNPDF Family Services and Marketing Coordinator), Beth Green (NNPDF Administrative Assistant) Not pictured: Jim Thompson, Lauren Grodin, Becky McGuire, Darrile Papier, Ryan Kelly

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, etc.  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 2015 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.


Heartfelt thanks to the following NNPDF Board Members stepping off in 2015:

Darrile Papier – who served in support of her son, Dillon, who is diagnosed with NPC

Ryan Kelly – who served in memory of his cousin, Erin Roberts, who passed away in 2004 from NPC

Sandra Cowie – who served in support of the entire ASMD community membership and who is an ASMD patient
.

In addition, we are pleased to welcome the following NEW Members to the NNPDF 2015 Board:

Anne O’Connor-Smith – who will serve on the board in support of the entire ASMD community membership and who is an ASMD patient

Heather Patenaude – who will serve in memory of her daughter, Monica, who passed away from NPC

Tammy Vaughan – who will serve in memory of her two children, Alex and Laura, who passed away from NPC, Tammy is also the current chair of the Canadian Chapter of the CCNNPDF
.

Lastly, the NNPDF is pleased to advise the NNPDF membership that the NNPDF 2015 Officers are:

Leslie Hughes – Board Chair

Lisa Chavez & Wayne Palmiter – Co-Vice Chairs

Nicole Farhat-Yanjanin – Secretary

Jill Flinton – Treasurer

 

To view all current NNPDF Board Members, as well as, those who have served in the past visit NNPDF Board of Director’s


The NNPDF is pleased to welcome Chris Klauer into the Central Office Staff position as: NNPDF Family Services and Marketing Coordinator

Hi ~ My name is Chris Klauer and I am the new Family Services and Marketing Coordinator at the NNPDF Central Offices.  I began my position with the NNPDF on February 18, 2015.  Just a bit about me….I am a mom to four awesome kids…Adam, Ben, CJ & Maddie and I am married to Chad.  I enjoy spending time with them, camping during the warm months in Wisconsin, history and genealogy!  You could say that genealogy is my passion (or is it an obsession)!  I love researching my family and learning more about the way they lived. 

In my past, I have worked as an administrative assistant, special education teacher, alternative school teacher and pre-school teacher.  I have been through the IEP process twice with my own children and understand how you sometimes have to fight for what is best for your child.  Through the years, I have learned that often in order to support your children you have to learn a great deal about available services and the educational process… it truly does take a village to raise a child with special needs and that sometimes you have to reach out and ask for help!

help (verb) 
        – make it easier for (someone) to do something by offering one’s services or resources
        – serve someone with (food or drink)

help (noun)
        – the action of helping someone to do something; assistance

help (exclamation)
         – used as an appeal for urgent assistance

Help is a four letter word and many think of a four letter word as something negative.  However, as a caregiver of an individual with NPD, the word “help” should never be thought of as a negative.  The definitions above do not have a negative word in them. Caregivers need to look at it from the other side.  A person is offering their assistance because of how they care about the family. They want to be there to support the family in any way they can.  This is their way of being a part of your team. 

We always see that slogan “there is no “I” in team”.  This is a true statement!  I know I always use the phrase “it takes a village to raise a child”.  It is not just one person or one set of parents.  It takes friends, family members and a community to raise a child or to make a caregiver’s life a bit easier.   Take those that offer you their assistance up on it!  Even if it is to take the garbage out every Tuesday so you don’t have to remember to do it.  The little things can make your life a bit easier.  

Above all please remember that the NNPDF Central office staff is here to help you.  While we may not be able to run to Ohio and take out your garbage there might be other things we can help with.  We are here to help you out!  To support you!  Send me an email at nnpdf@nnpdf.org or contact me on Facebook (NNPDF Office Staff) – and – I will do my very best to be of assistance.  I look forward to hearing from you!

Chris Klauer
Family Services and Marketing Coordinator


NNPDF Fellowships ~ Request for Applications

Deadline: May 15th, 2015

The  National Niemann-Pick Disease Foundation (NNPDF) would like to extend a reminder that applications for the Peter G. Pentchev (NPC) Fellowships into research associated with Niemann-Pick Disease Type C are due by May 15th, 2015 so as to be considered in this grant funding cycle.

The National Niemann-Pick Disease Foundation invites applications for research fellowships examining the biology of Niemann-Pick Type C (NPC) disease, a lethal neurodegenerative disease for which there are no effective therapies.

Those eligible to apply for funding are:

  • Predoctoral students with a lab selected and an approved thesis
  • M.D., Ph.D and D.V.M postdoctoral researchers
  • Early career investigators

Preference will be given to research projects developing new therapies for NPC, and translational research projects that improve our understanding of the biology, pathogenesis and potential treatment of NPC disease.

The fellowships provide support of up to $50,000 per annum for two years ($30,000 per annum for three years for predoctoral fellowships) and may be renewable based on performance. Applicants must be currently associated with a recognized laboratory.

Applications are due May 15th, 2015, and should be submitted by e-mail to the NNPDF Central Office at research@nnpdf.org. Information regarding application procedures is below. Applicants will be informed of the funding decision by September 1, 2015, via e-mail. Fellowships awarded will begin October 1, 2015.

For further information please contact the National Niemann-Pick Disease Foundation’s Central Office.

Completed applications are due on Friday, May 15th, 2015, and should be submitted via e-mail to the NNPDF Central Office at research@nnpdf.org. CLICK HERE for information regarding application procedure. Applicants will be informed of the funding decision by September 1, 2015, via e-mail. Fellowships awarded will begin October 1, 2015.

Printable Flyer/Poster about Peter G. Pentchev Fellowship

Clinical Trial Updates
.

– ORPHAZYME –

Orphazyme Announcement:
Orphazyme Kicks off Clinical Program of Arimoclomol in Niemann-Pick Disease Type C 

Dateline: 04/15/2015

Dear NNPDF Families and Friends,

The National Niemann-Pick Disease Foundation is pleased to share with you the following announcement received from Orphazyme ApS of an upcoming clinical trial for Niemann-Pick Disease Type C.  Orphazyme ApS (Copenhagen, Denmark) develops new therapies for the treatment of rare and genetic diseases. 

CLICK HERE to read the full press release.

As more information becomes available we will continue to update this page, as well as, our social media sites.

.

– VTESSE –

Vtesse, Inc. Cyclodextrin for NPC Webinar
Dateline: 04/16/2015 

Dear NNPDF Families and Friends,

On Thursday, April 16th, 2015 Vtesse, Inc. held a 90 minute webinar geared towards NPC families in the US, Canada and the UK. We are pleased to say the webinar was well attended. 

The webinar included a panel of experts who discussed the current Cyclodextrin trial, the human element of the current patients enrolled, as well as, what Vtesse intends to accomplish moving forward.

Click here for the full history of the Cyclodextrin trial


NNPDF Equipment Exchange

The NNPDF Central Office Staff would like to remind you that the foundation does support an equipment exchange program to assist our family membership.  This program is to assist families who wish to donate equipment that may be useful for another NPD family or for those who are in need of specific equipment. 

As NPD patient and family needs change during a chronic illness, there may be equipment stored in homes that is no longer needed and could be put to use by another family. The NNPDF will assist families who wish to donate this equipment. Our goal is to ensure that all NPD families have access to equipment that they need to assist their loved ones affected by Niemann-Pick Disease.

 

If you have equipment to donate or a need for equipment please go to the Equipment Exchange Page on our website to learn more about the program or please feel free to contact the NNPDF Central Office to chat with Chris Klauer, NNPDF Family Service & Marketing Coordinator to see how we can best assist you. 

On the web site there is a fillable form that you can use and email back to the office at nnpdf@nnpdf.org indicating either the type of equipment you have available to exchange and/or the type of equipment and medical needs which your loved one may need.  In addition, as you scroll down the page you will see instructions that may assist you in describing the equipment you might have or that you might be looking for.

Due to the cost of shipping, participation in this Equipment Exchange program is limited to residents of North America.  Families with a member affected by Niemann-Pick Disease who live outside North America may contact us and we may be able to make referrals to other sources for equipment needs.

Any questions please email the office at nnpdf@nnpdf.org or call 1-877-287-3672.


9 8.16

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

JOIN THE NNPDF     DONATE TO THE NNPDF


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