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