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June 2018 Newsletter

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Message from the Executive Director

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Dear NNPDF Families and Friends,

I am pleased to greet everyone in this month’s Newsletter! Throughout my recruitment and onboarding process, I have learned about the passion and commitment of the community and your desire to make a dramatic impact in rare disease by bringing vital treatment options to market for Niemann-Pick diseases.

During the transition, I am working in partnership with the Board, Reinvention Director, Amy Kant, and the Reinvention Advisory Committee to support the process that began with the Vision of Hope campaign. We are actively taking steps to fulfill the mandate of the reinvention process to move forward together, creating a strong Family Service Program that supports patients and families throughout their journey. We will continue on this path as a strong and resilient advocacy organization, supporting and partnering with you to find treatments and ultimately a cure for all types of Niemann-Pick Disease. We are working to build upon existing programs like the Community Industry Feedback Pilot Program and also to strengthen our advocacy capacity and our collective voice. One of these initiatives is our partnership on the International Niemann-Pick Disease Registry (INDPR) to launch the registry here in the U.S. 

As you’ve learned over the past year, a unified patient voice managed through a national patient organization is essential for the success of regulatory efforts and for attracting industry investment. NNPDF’s leadership role in the community is to advocate for the independent interests of all patients and to provide unbiased, well-balanced and accurate information to patients/families.

With multiple clinical trials, this is an exciting moment and one that I am delighted to help support alongside NNPDF leadership. I come to you with over 12 years of patient advocacy work within the pharmaceutical industry and extensive experience promoting access to medications and working with patient groups to reduce barriers and challenges. Prior to this, I began my career within the nonprofit world at Hadassah International, a global medical relief organization. My passion for rare disease was sparked when I worked to bring a Gaucher disease medication into the marketplace and saw the crucial impact that medical and scientific advances can have on unique populations.

I am so excited to see everyone at the Family Conference in Louisville, Kentucky, August 2nd – 4th. Together we will hear updates on clinical trials participation, advocacy, forums to exchange ideas and support one another as ASMD and NPC parents, siblings, and adults, and of course, our Gala dinner.

I look forward to working together to strengthen the voice of the Niemann-Pick community.

Fondly, 


Joslyn Crowe, MSW, MNPM
NNPDF Executive Director

 

NNPDF 26th Annual Family Conference

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JUST 6 WEEKS remain before the NNPDF 26th Annual Family Conference being held from August 2-5 in Louisville, Kentucky!

CONFERENCE REGISTRATION AND HOTEL RESERVATION DEADLINES ARE QUICKLY APPROACHING! Visit nnpdf.org/2018fc for all conference information including the 2018 Conference Agenda, Conference Registration, and Hotel Reservation information.

The 2018 Family Conference program provides time for attendees to exchange ideas, support one another, and learn from our shared experiences. Louisville offers something for everyone whether you enjoy history, shopping or an adventure.

REGISTER HERE

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NNPDF Equipment Exchange

The NNPDF Equipment Exchange Program assists families who wish to donate pre-owned equipment to others who may be in need. The foundation facilitates any equipment requests and donations.

We currently have several items looking for a new home. Click the Special Equipment button to check out the items available. If you have any questions or an interest in any of these items, please contact the NNPDF at nnpdf@nnpdf.org.

Equipment Successfully Re-Gifted

Dakota (Coty) was on the receiving end of a Families to Families Equipment Exchange. He was able to get this great walker! Mom (Elizabeth) says he is working on getting strength in his legs and is getting stronger day by day! They both say thank you to the families on the other end for keeping this piece of equipment moving between families and the NNPDF for getting it shipped to them!

This is just one of the items in 2018 that the NNPDF has been able to assist in re-gifting. If you have an item please let the NNPDF know at nnpdf@nnpdf.org.

 

Clinical Trial Updates

The NNPDF posts new information regarding clinical trial updates as soon as it is received.

Please review our Clinical Trial Update procedure for alerting you to these updates as they are made:

1.  The office posts information received about trials and expanded access therapies from companies on the NNPDF website under the appropriate pharmaceutical company.
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2.  When information is received, it is posted to the website and a summary post is made on the NNPDF Facebook Page and/or NNPDF Awareness Group, with a link back to our website where you can find more detailed information.
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3.  All updates from pharmaceutical companies are included in the next monthly e-newsletter with links back to the original posting on the website.

To review past information already posted, just follow this link: nnpdf.org/research.

 

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Fundraising and Awareness Opportunities

Contributions through fundraising by NNPDF members, families and friends are used to provide services and information to individuals and families affected by NPD, as well as supporting research into finding treatments. Please continue to host and support NPD fundraisers.

Awareness Events promote awareness to the general public about Niemann-Pick Disease.

Click the Fundraising button to view current and past NPD events.

Facebook Fundraisers

The NNPDF would like to thank those of you who have hosted a Facebook Fundraiser in the past! Are you interested in hosting? It is a great opportunity to raise awareness and funds for the NNPDF.

If you are hosting a fundraiser please email the NNPDF Central Office at nnpdf@nnpdf.org to let us know.

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Stay Connected With Us

A quick reminder that if you are not receiving our NNPDF monthly newsletter via email or have recently changed your address or email, please click the button below to join us or to update your information.


9 8.16

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

JOIN THE NNPDF   VISIT OUR WEBSITE   DONATE TO THE NNPDF

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DISCLAIMER: 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.
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.