May 2018 Newsletter
Dear NNPDF Family and Friends,
The NNPDF Board of Directors is delighted to share with you that we have successfully concluded the national search for a new Executive Director. Please join us in welcoming Joslyn Crowe, our new NNPDF Executive Director. Joslyn is aware of the determination and dedication of this community. We have shared with her your commitment to one another and the rebuilding effort that began in earnest with the completion of our Vision of Hope Campaign, in which many of you and all of our industry partners have invested. She understands that you have given us a clear mandate to move forward to build a strong, resilient, unbiased advocacy and family support organization.
The NNPDF Board, under the guidance of the Reinvention Advisory Committee, has worked tirelessly over the last year to put in place a more structured approach to position the NNPDF for a focused leadership role in the community. Specifically, we have clarified our position with industry by developing the Industry Policy Statement, which has been well received by all of our industry partners. They have affirmed the NNPDF as the lead communicator for clinical trial information and partnerships with patients and families in the U.S. market. Additionally, our outreach to the FDA this year has strengthened their awareness of the urgency for approved clinical treatments for Niemann-Pick Disease. Joslyn is poised to take the work we have done over the past year to the next level, and unite our collective voice throughout the regulatory process. She also understands that an important part of this role will be to address market access and affordability issues.
Joslyn comes to NNPDF with over 12 years in patient advocacy leadership working with pharmaceutical companies to build strong partnerships with patient groups. Her previous non-profit management experience includes a management role building Hadassah International’s first young leadership program. She has a Masters of Social Work and a Masters of Non Profit Management. To read more about Joslyn, please click here. Joslyn will be reaching out to you as a community in the upcoming months, and is looking forward to meeting you at the NNPDF 26th Annual Family Conference.
As we take this next step into becoming a professionally led organization, we want you to know that the Board is committed to a smooth transition with regard to the reinvention of the NNPDF, while supporting Joslyn in her onboarding process as she gets to know you. To this end, Amy Kant, NNPDF Reinvention Director, is staying on for a transition to support her, continue to be the liaison to industry and to help manage this year’s family conference.
At the family conference, you will have a chance to meet Joslyn and to hear her goals for the upcoming year as we continue to build and strengthen our foundation to meet the growing needs of families today. We will be expanding our time to engage with one another and participate in break out groups. You will also learn about the drug development process, discuss the basics of understanding clinical trials, and receive updates on all of the FDA approved clinical trials along with ASMD and NPC research. As well, we will have an update on the International Niemann Pick Disease Registry (INDPR) and the launch of the registry in the U.S. market. As we did last year, you will also have an opportunity to join us in interactive discussions about our common needs as a community. Please remember that early bird deadline for signing up for the conference is June 15. You can register today at: nnpdf.org/2018fc.
The Board is grateful to all of you who understand how important it is that we have taken this time to strengthen our organization and to those of you who supported the Vision of Hope. Many of you shared valuable input as we took a hard look at our community. Your input has been critical in identifying what the NNPDF could and should provide for us. Your willingness to look honestly at where we have been, and where we need to go as a community, has been valuable and will lead to a much stronger patient group. We are grateful for the notes of encouragement from those of you throughout the community, they really strengthened us as Board and Staff to persevere through this initial phase of the rebuilding process.
Moving forward, Joslyn will be writing to you in our monthly newsletter, sharing noteworthy items and developing program initiatives. As she continues our efforts to rebuild, Joslyn and the NNPDF Board of Directors will need your help. We will seek to more deeply engage your support and partnership to develop a united community voice – one that serves all families affected by Niemann-Pick Disease.
Continued blessings to you and your family,
NNPDF Board Chair
You may have seen the news about the European Union’s new General Data Protection Regulation (GDPR), went into effect on May 25, 2018. If you live outside the US, in order to comply with GDPR consent requirements, your consent is required to continue to receive email content from the National Niemann-Pick Disease Foundation, Inc. (NNPDF).
Please refer to the email send on May 23rd to provide consent to continue email notifications from the NNPDF if you have not already done so.
You are warmly invited to sign-up again by emailing the NNPDF Central Office at email@example.com. You can withdraw your permission to receive our emails at any time by using the unsubscribe link found at the bottom of every email you receive from us.
We know you’re busy, please take a moment to stay in touch by clicking the button!
Have you registered yet for the NNPDF 26th Annual Family Conference being held from August 2-5 in Louisville, Kentucky? You never know what fun the Activity Zone is going to prepare for Saturday night, surely something you will not want to miss!
The NNPDF staff have all the information you will need in one location at nnpdf.org/2018fc.
REGISTER BY JUNE 14th
for the best rate on your conference registration fees!
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.
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.
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.
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 firstname.lastname@example.org.
New Equipment Available:
Invacare Offset Trapeze Bar for G-Series Bed
Invacare Fixed Offset Trapeze Bar is designed specifically for Invacare G-Series Beds. The Trapeze attaches directly to the bed’s headboard. An important patient room accessory designed to help patients change positions while in bed, and aid in the transfer from bed to chairs with minimum attendant assistance. Click here for additional Trapeze Bar information.
For a current list of all available items, please click the SPECIAL EQUIPMENT button above.
Equipment Successfully Re-Gifted:
Thank you to the families who have recently donated These items. We are happy to share that these items have been successfully re-gifted to very grateful NPD families!
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.
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 email@example.com to let us know.
The EveryLife Foundation for Rare Diseases is pleased to announce the 10th Annual Rare Artist Contest. This contest, which celebrates the unique talents of the rare disease community, is open to rare disease patients, family members, friends, caregivers and medical professionals. The contest will be accepting entries through October 19th, 2018. Visit rareartist.org/2018-art-contest/ for complete contest information.
SHOW YOUR SUPPORT! Visitors can vote for their favorite artwork via the Facebook Gallery once every ten days through October 26th. Two awards will be given in each of 4 categories: one to the entry receiving the most votes on Facebook, and the other selected by a panel of rare disease community leaders. Please let us know at firstname.lastname@example.org if you submit an entry. We’d love to show our support!
Award recipients will have their artwork on display during the Rare Artist Reception in Washington DC on February 27th, 2019 held in conjunction with RDLA’s Rare Disease Week on Capitol Hill. Artists residing in the United States whose work is chosen for this reception will be eligible for travel stipends to provide the opportunity to see their artwork displayed on Capitol Hill. If you have questions about the contest please email the Contest Curator, Grant Kerber, at email@example.com.
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.
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