NNPDF Reflections ~ 2014

Dear NNPDF Families and Friends,

Today, as we all take time to reflect on the past year, the NNPDF community has quite a number of uplifting and positive milestones upon which to reflect  for 2014.  Unfortunately, we again have had heartbreaking losses of loved ones to Niemann-Pick Disease whom we all hold so close to our hearts.  Despite these soul crushing losses, the NPD community has made considerable progress in research and advancement towards therapies with the start of patient clinical trials for both Niemann-Pick type C and ASMD (NPD Type B).  There have also been many personal triumphs shared within the community and the foundation continually to strives towards offering and building upon our stellar family support programs and continued financial commitments towards research.

To cap off 2014, we have created a “Year-end” e-Newsletter to share with the NNPDF community. 

Visit the NNPDF Newsline web page to view the e-Newsletter: http://www.nnpdf.org/NewsLinePage.html#NewYear2015

We have been fortunate to be a part of your lives throughout the year and are looking forward to the HOPE which 2015 will bring. 

Have a warm and love filled New Years and we'll see you in 2015!

Season's Greetings from the National Niemann-Pick Disease Foundation!

Dear NNPDF Families and Friends,

The National Niemann-Pick Disease Foundation would like to wish you all season's greetings! 

May lovely, happy times decorate your holiday season, may warm, special memories brighten your New Year and may the wonder of the season be with you all. 

~ NNPDF Office Staff & Members of the Board of Directors

Twelfth "Day and Way" of Caring for the Caregiver ~ Give Yourself Credit for All the Good You Do ~

Dear NNPDF Families and Friends,

The holiday season always helps to bring out the best in people. It is a time for giving back, when we have an opportunity to show our appreciation to those we love with a thoughtful gift and words of encouragement and appreciation. Thought gifts and kind words are always well received ~ so why don’t we all take the time to express our thanks and gratitude more often?

As a caregiver, you may not feel deserving of praise, but what you do every day is truly remarkable and so self-less. Without ceremony and without praise you continue on…day in and day out…not just once a year. You choose to enrich the lives of, not only the one you are caring for, but extend your kind spirit and graciousness to all those in your life. Even if there are thankless days in the coming year, it is helpful to learn the best ways to actually see the value in your efforts and to encourage yourself with a pat-on-the-back now and then! 

Visit the NNPDF Newsline web page for some additional links on how to encourage yourself, or to be supportive of a caregiver in your life, and how best to give them a boost of self-esteem, as well as, the energy to Persevere: http://www.nnpdf.org/NewsLinePage.html#TwelveDay12

Eleventh "Day and Way" of Caring for the Caregiver ~Know Your Limitations~

Dear NNPDF Families and Friends,

As we worked on our countdown toward the Holiday’s this month, we touched upon the idea of “Knowing Your Limitations” a few times, especially in offering you ways to take care of yourself as a caregiver. By placing a focus towards yourself ~ physically, emotionally & mentally ~ you are ensuring that you engage in the cardinal rule of caregiving:

~ Take care of yourself so you CAN take care of your loved one. ~

“Knowing Your Limitations” is a key element of caring for a loved one. IF you fail to recognize and follow the points we have highlighted previously, IF you overload yourself each day you WILL run the risk of Caregiver Burnout Syndrome.

By “Knowing Your Limitations” not only can you better plan your days, but it will allow you to spend more of your time enjoying the time with the one you are caring for.

Visit the NNPDF Newsline for tips to help you to identify and stay true to your limitations: http://www.nnpdf.ca/NewsLinePage.html#TwelveDay11

Tenth "Day and Way" of Caring for the Caregiver Regularly connect on-line with support groups

Dear NNPDF Families and Friends,

Connecting with other NPD families and patients can offer a wealth of information. Others may be able to offer suggestions and tips on care for your loved one. They may know of connections to retailers or online resources for clothing needs, equipment, exercise and therapies and family support. They might be able to recommend a specialist in another city when your doctor just isn't helpful enough. They may simply offer moral support, much needed for those with difficult medical challenges.

Treatment involves more than routine medical diagnosis, hospitalized care or even the prescription of drugs. When confronted by illness, family caregivers and patients seek professional help and advice from their doctors, and also rely on support from family members, peers and fellow patients. Patients' with genetic diseases are no exception to this reality. They too face complexities and complications that require a network of professional support staff, family, and friends.

To this end, the National Niemann-Pick Disease Foundation offers several avenues of Social Networking tools available to our NPD membership.  These networking tools offer a variety of services and resources to assist our families, caregivers and patients as they work to cope and adapt to the lifestyle that is often dictated by the complications of Niemann-Pick Disease.

Visit the NNPDF Newsline web page to see all the resources and services available for our family membership: http://www.nnpdf.org/NewsLinePage.html#TwelveDay10

Ninth "Day and Way" of Caring for the Caregiver ~ Give yourself a special treat at least once a month ~

Dear NNPDF Families and Friends,

In support of all our Caregivers we wanted to offer you some fun and easy ways to treat yourself to a break that is neither expensive nor time consuming. You can have the opportunity to spoil yourself at least once a month ~ and more often if needed! You may not get a whole day at the spa, but you can learn to take advantage of those brief but windows of opportunity and down-time when they “pop-up”. 

Visit the NNPDF Newsline web page for a few easy suggestions to find activities outside of the home to peak your interest and recharge your energy: http://www.nnpdf.org/NewsLinePage.html#TwelveDay9

Eighth "Day and Way" of Caring for the Caregiver ~ Learn relaxation techniques to help alleviate stress!

Dear NNPDF Families and Friends,

Stress is necessary for life. You need stress for creativity, learning, and your very survival. Stress is only harmful when it becomes overwhelming and interrupts the healthy state of equilibrium that your nervous system needs to remain in balance. Unfortunately, overwhelming stress has become an increasingly common characteristic of contemporary life ~ especially when one is faced with the ongoing care of a loved one.

The NNPDF Central Offices have identified useful web site resource programs which will assist the user in identifying available and easy options for caregivers that will help you to find the right relaxation techniques for stress relief.

Visit the NNPDF Newsline web page for additional links: http://www.nnpdf.org/NewsLinePage.html#TwelveDay8

NNPDF December 2014 e-Newsletter Available!

Dear NNPDF Families and Friends, 

The NNPDF December 2014 e-Newsletter is available! Highlights include the following ways you can shop before the holidays online that will benefit the NNPDF:

• iGive
• Goodshop
• Amazon Smile 
• NNPDF Bravelets and Beads
• NNPDF Persevere Wristbands 

Click the link to view the NNPDF December 2014 e-Newsletter: http://www.graphicmail.com/new/viewnewsletter2.aspx?SiteID=4117&SID=0&NewsletterID=1264027

Seventh "Day and Way" of Caring for the Caregiver ~ Explore Community Resources and Connect Yourself to Them ~

Dear NNPDF Families and Friends,

There are many programs available to family caregivers, both locally and online. These programs not only provide information about caregiving, such as available services and how to gain access to them, but also provide information on counseling resources and access to support groups in your area. 

Visit the NNPDF Newsline web page some useful online resources for caregivers: http://www.nnpdf.org/NewsLinePage.html#TwelveDay7

Sixth "Day and Way" of Caring for the Caregiver ~ Take a Break Every Day~

Dear NNPDF Families and Friends,

Previous posts have addressed the importance of taking care of yourself as a caregiver, but it is certainly easier said than done, especially when your entire day is focused on caring for the needs of those you hold dear.

One of the easiest things you can do when planning your day is to find ways to incorporate mini-breaks to focus on yourself. They don't have to be long or involved and can be spread throughout the day to ensure that you are not only getting enough time for yourself, but that these breaks are not interrupting your required daily routines.

Visit the NNPDF Newsline web page for some suggestions as to how you can work both the time and the break into everyday life without giving up or imposing upon your important care routines: http://www.nnpdf.org/NewsLinePage.html#TwelveDay6

Fifth "Day and Way" of Caring for the Caregiver ~ Seeking Professional Help if Needed ~

Dear NNPDF Families and Friends,

Thus far, the NNPDF has offered you “four days and four ways” to better your physical & mental well-being as a caregiver, but there are times when the stress associated with caring for an ill loved one simply becomes overwhelming. 

If you find yourself in this situation, it is important to know that you are not alone.  So often, caregivers find that they are simply coping from day-to-day, too afraid to seek help or downplaying their very real need for assistance and outside help.  First and foremost, know that there is no shame in asking for and receiving professional help.

But where do you begin?  What resources are available?  With any other hard decision, the enormity of taking that first step can be further delayed when you have no idea where or how to take that first step.

Visit the NNPDF Newsline web page on how to seek such help when needed: http://www.nnpdf.org/NewsLinePage.html#TwelveDay5

Day 3 ~ 12 Days, 12 Ways to Care for a Caregiver ~ Give Yourself Permission to Have a Good Cry

Dear NNPDF Families and Friends,

No matter what we do to try and manage our time and our stress levels, there is one great way to release stress which carries with it a taboo and is often considered a weakness ~ allowing one to have a good cry. Today, our “Caring for the Caregiver ~ 12 DAYS and 12 WAYS” will focus on why it's important to give yourself permission to have this emotional release and let the tears flow.

Visit the NNPDF Newsline web page to find out why you should give yourself permission to cry: http://www.nnpdf.org/NewsLinePage.html#TwelveDay3

Day 2 ~ 12 Days, 12 Ways to care for a Caregiver ~ Don't Overload Your Daily "To Do" List - Be Realistic.

Dear NNPDF Families and Friends,

Every day we set daily goals for ourselves to keep up with this busy and ever evolving world. It's not only the goals we set for ourselves, but the expectations from others as well, that define how we spend the hours given to us in a day. 

For someone whose entire day revolves around care giving though, this can cause a lot of stress because expectations they place on themselves and outside sources are higher.

We would like to offer you a “quick tip” to work into the start of every morning to help you to put your day into a better, more positive perspective:

"I will be realistic with my goals every day, setting them only to the benefit of the one I'm caring for as well as for myself." 

Visit the NNPDF Newsline web page for the full list of tips that can help you manage your day: http://www.nnpdf.org/NewsLinePage.html#TwelveDay2

Day 1 ~ 12 Days, 12 Ways to Care for a Caregiver ~ Taking Care of Yourself Physically ~

Dear NNPDF Friends and Family,

December brings holiday excitement, a magical time of the year for children and adults to get caught up in the hustle and bustle of wrapped gifts, family gatherings, good food and the wonder and hope that a new year will bring into their lives.

For our Niemann-Pick Disease families though, the holiday season can be both difficult and overwhelming. The disease slowly chipping away at our loved ones doesn't take a holiday vacation and the unending grief of having lost a loved one to NPD becomes amplified with the passage of another year. 

Beginning today, Wednesday, December 10th, and counting down the next ~ 12 DAYS ~ towards the holidays, we will be highlighting ~ 12 WAYS ~ to Care for a Caregiver this holiday season. These 12 WAYS were specifically identified as ways to reduce stress during the upcoming hectic holiday season and assist the Caregiver in taking time for yourself in 2015! 

We also want to ask those individuals who know of a Caregiver in their lives, to take the time to reach out in thoughtful and loving support this holiday season. In the upcoming “12 DAYS & 12 WAYS” countdown, we will also be offering suggestions on how best you can offer a helping hand to those important and selfless Caregivers in your lives.

Visit the NNPDF Newsline web page to finds out small ways Caregivers can better take care of themselves physically: http://www.nnpdf.org/NewsLinePage.html#TwelveDay1

ALERT! Actelion US ~ Zavesca (miglustat) Patient Co-pay Program ~ Program Changes Effective January 1st, 2015 ~ SUSPENDED!

After a number of our NNPDF family membership received a notification from Actelion that their sponsored Patient Co-pay Program for Zavesca would be changed to cover ONLY adult patients who are 18 years of age or older, the NNPDF reached out to representatives at Actelion US to discuss the detrimental impact that this policy change would have on the NPC patient population in the United States currently being prescribed Zavesca (many of whom are children and have been prescribed Zavesca for years.)

After further discussions between the NNPDF and Actelion US, we have been advised by Actelion US that implementation of this program is going to be SUSPENDED at this time. 

Actelion US has indicated that in making this program change ~ they did not fully understand the catastrophic impact that this change would have on the NPC patient community.  In making this decision it was noted that Actelion US understands the significant need to ensure that there will NOT be a disruption of this program which ultimately leads to the care and well-being for our NPC patients in the United States.

Further, the NNPDF has been advised that an official notification from Actelion US will be mailed to the families whose children are currently prescribed Zavesca and who had originally received documentation advising them of the changes in the Zavesca Patient Co-pay Program.  This document will advise of the suspension of this program.  In addition, Actelion US has indicated that they will advise the support team at Accredo Specialty Pharmacy as to the suspension of this program to guarantee that there will NOT be a disruption of the Actelion US ~ patient Co-pay Program on January 1st, 2015 for any patient (adult or child) being prescribed Zavesca.

The Actelion US decision to suspend the implementation of this change is in line with their corporate philosophy to strive to treat more patients with ground-breaking therapies, a mission which both inspires and motivates them as a corporation. 

The NNPDF is thankful that our family membership reached out to us for support in this matter and that we were able to inform Actelion US the serious necessity that this program continue without disruption.  Actelion US will continue to be in contact with the NNPDF to keep us appraised of any program or corporate changes which may impact our patient membership in the future.

If you should have any questions pertaining to this matter ~ and/or ~ you run into problems with coverage of this medication in the New Year ~ please feel free to contact the NNPDF Central Offices.

Kind regards,
Nadine

http://www.nnpdf.org/NewsLinePage.html#Zavesca

Update from Genzyme on Acid Sphingomyelinase Deficiency (ASMD) Development Efforts ~ December 9th, 2014

Dear NNPDF Families and Friends,

The NNPDF Central Offices have been notified that Genzyme, a Sanofi Company, has released an official press announcement with details of the pediatric Phase 1 / 2 clinical trial & the adult Phase 2/3 of recombinant human acid sphingomyelinase (rhASM).

Visit the NNPDF Enzyme Replacement Therapy web page to view the press release

This is truly an exciting time for our Niemann-Pick Disease Type A & B (ASMD) families and community and the NNPDF looks forward to working with all involved in this matter as we work to ~ PERSEVERE in our Quest for a Cure! 

Genzyme's Expression of Hope III Submission Deadline: Friday ~ 12/05/2014

The NNPDF would like to remind the NPD community that Genzyme's Expression of Hope III (EOH) program is still open for submissions.

It is EASY to take part ~ sharing your artwork through this program is an excellent way to help raise AWARENESS into NPD ~ as the artwork will be travelling around the WORLD as a gallery!

Follow this link to learn more details: DEADLINE: Friday ~ 12/05/14 

Visit the NNPDF Newsline for more information on the Expression of Hope III: http://www.nnpdf.org/NewsLinePage.html#EOH

Expression of Hope 2009

Artist: Roy Green

Country: Scotland

Condition: Niemann-Pick Disease

Artist Statement: "During the week I am often found delving into the realms of art, music, radio, textiles, traveling and cinema.  At present I'm working on a couple of mixed media projects, one of which I have just completed.  I feel my interpretation of Monet's "San Giorgeio Maggiore at Sunset" using paint, pastel and tissue portrays the ultimate sunset with the enhanced use of colour and texture." 

Show us that the WORLD gives as good as it gets!

#Giving ‘Tree’ Tuesday unifies charities, corporations, small businesses and individuals across the GLOBE to show that you don’t need to be a billionaire to give back or to make a difference!  Today is about ordinary people coming together to do extraordinary things!  Won’t you join us in this extraordinary opportunity in support of the NNPDF today and benefit from matching funds with our partners at “NetworkForGood”? 

https://donatenow.networkforgood.org/nnpdf?code=Homepage

With heartfelt thanks,

NNPDF

A special call to action on #Giving ‘Tree’ Tuesday!

In the wake of consumer-driven Black Friday and Cyber Monday, #Giving ‘Tree’ Tuesday is a day dedicated to giving back.  Obviously, the heart of this holiday resonates well with so many eager to make a difference in the lives of others.  Won’t you consider making a contribution to the NNPDF today and benefit from matching funds from our partners at “NetworkForGood” and challenge your family and friends to do the same!

https://donatenow.networkforgood.org/nnpdf?code=Homepage

As always,

NNPDF

The Holidays CAN be about Giving Back!

Today’s #GivingTuesday, is a global holiday dedicated to giving back. While we’re all busy trimming our trees and finding mall parking, it’s important to stop and take care of each other.  If you can give a gift or spread the word with all at the NNPDF in support of the programs sponsored by the foundation ~ we’d be very grateful.  Donations today go even further with matching funds from our partners at “NetworkForGood”. 

https://donatenow.networkforgood.org/nnpdf?code=Homepage

Happy Giving Tuesday, 

NNPDF

Your GIFT will go further today!

Number crunchers anticipate Americans will spend a record $89 billion shopping online this holiday season. That’s a lotta digital dough. #Giving ‘Tree’ Tuesday is a special “call-to-action” which creates a national day of giving and puts philanthropy back into the holiday giving season!  Your donation today goes even further in support of the programs developed by the NNPDF with matching funds from our partners at “NetworkForGood”.  

https://donatenow.networkforgood.org/nnpdf?code=Homepage

Your continued efforts are appreciated ~ as always, 

NNPDF

Be a part of something BIG!

In the wake of Black Friday and Cyber Monday’s frenzy, #GivingTuesday is a day dedicated to true giving. #GivingTuesday’s goal is to boost humanity rather than the economy and there is no better way to assist with this challenge than through a donation towards the efforts of the NNPDF!  A donation today, #Giving‘Tree’Tuesday goes even further, as it qualifies for matching funds from our partners at “NetworkForGood”.  Join with us in this BIG effort towards a BIG change!  

https://donatenow.networkforgood.org/nnpdf?code=Homepage

With deep appreciation for your continued support, 

NNPDF

A GLOBAL Day to Give Back!

Today’s #GivingTuesday, a global holiday dedicated to giving back. The NNPDF is making an impact to giving by challenging our constituents to support our programs!  Won’t you help us meet the challenge and, in turn, challenge your family and friends to do the same.  Donations made on-line today, December 2nd, benefit from matching funds from our partners at “Network for Good”.  Donate here in support of the NNPDF! 

Kind thanks to all for your continued support,

NNPDF

Planning to Give at Year End? Do it Today and Make it Count on #GivingTuesday!

Your gift will go further today!  Donate now to make a difference on #GivingTuesday with matching funds from the Network4Good: https://donatenow.networkforgood.org/nnpdf?code=Homepage

Donate on #GivingTuesday to ensure a better tomorrow for those with Niemann-Pick Disease!

Give big today for #GivingTuesday to help us win matching funds from the Network4Good: https://donatenow.networkforgood.org/nnpdf?code=Homepage

Giving “Tree” Tuesday ~ a Global Day of Giving!

Giving Tuesday is a global day dedicated to giving back to our wider NPD community at large.

Join us today, December 2, as the philanthropic community unites around the world for one common purpose:
to celebrate the power of generosity by giving to those who need it most.

There's no greater time of year to give from your heart than during the holiday season.

Today, December 2nd, a donation on-line to the NNPDF will be receive matching funds from our partner’s at “Network for Good”!

Follow this link to donate today: https://donatenow.networkforgood.org/nnpdf?code=Homepage

We WILL Persevere in our Quest for a Cure!

Spread the Word... #GivingTuesday is Here!

Dear NNPDF Families and Friends,

Today is the day! For every $25.00 donation made online today at www.nnpdf.org, the Network for Good will match it with a $1.00 donation to the NNPDF!

Won't you considering making your end of year donation today? 

Help us get the word out today on social media by sharing this post with the hashtag #GivingTuesday. 

With your support, we can Persevere in our quest for a cure! 

Happy & Safe Thanksgiving Greetings from the NNPDF!

Dear NNPDF Families and Friends,

The National Niemann-Pick Disease Foundation would like to send everyone wishes for a safe and happy Thanksgiving.

Time and again, our NPD families have shown that, despite the challenges faced, they give thanks for all the opportunities which arise from those struggles through Perseverance, as only NPD families can.

We are very thankful for your continued support and that you allow us into your lives, where we hold you close in our thoughts and our hearts year round.

Best wishes to all for a warm and love-filled Thanksgiving holiday,

~ The Board Members and Staff of the NNPDF

"NNPDF Participates in Giving Tuesday" ~ News Article

Dear NNPDF Families and Friends,

As we continue with our #GivingTuesday campaign, our local newspaper, the Jefferson Daily Union released an article detailing the Foundation's efforts to raise awareness and funds for Niemann-Pick Disease programs on December 2nd, 2014!

The article, written by Pam Wilson, details not only what the intent behind the #GivingTuesday campaign is in general, but why the Giving Tree was the decided theme the NNPDF developed for this year.

Read the article here: http://www.nnpdf.org/documents/GivingTree.pdf

We would like to encourage our friends and families to help raise funds this #GivingTuesday by making their year-end donation online on December 2nd, 2014 to earn matching funds via www.nnpdf.org.

Follow us on Twitter and Facebook!

Dear NNPDF Families and Friends,

Our goal is to open up further avenues of communication between the NNPDF Central Office and all those battling with Niemann-Pick Disease, whether family, friend or patient. With the majority of day to day interactions occurring via smart phones and tablets, it makes the most sense that communities are turning to social media web sites for news and other media outlets due to their popularity and ease of use. 

We would like to encourage our NNPDF community to follow us on Twitter and Like us on Facebook so you are ensured to receive accurate and timely posts with the most recent NPD related news and clinical trial updates. Share our pages with your own followers and help our NPD community and families to reach a larger audience.

It is our hope that as we expand in the social media networks the NNPDF and our family membership will benefit by raising awareness and promoting online giving in support of our programs and research. In addition, it is our goal that families diagnosed in the future, who may not know where to turn, can more readily find their way into our unique and supportive community. 

Join/Like us on Facebook: https://www.facebook.com/groups/nnpdf/

Follow us on Twitter:  https://twitter.com/nnpdf