NNPDF Board Updates



A Message from Jill Flinton, NNPDF Finance Chair
Dateline: January 12th, 2016

Jill Daniel
Jill Flinton
Mother of...
... Daniel Flinton, NPC 
12/07/06 - 11/11/11

January 12th, 2016

Hello NNPDF Family Members:

We have all had a busy 2015, including a successful Family Support and Medical Conference in Chicago, International October Awareness Month and lots of encouraging information about clinical trials for all types of Niemann-Pick Disease. The volunteer Board members have also been very busy, meeting many times as a board as well as in committees since the Family Conference.

This update is a financial update, from the Finance Committee.

Every year, the NNPDF hires an independent accountant to audit the prior year financial records and provide a written report. The independent accountant also prepares the IRS 990 and Wisconsin State Tax Returns. The audit report and tax returns have been prepared by the accountant, submitted to our Audit Team (which is separate from the Finance Committee), reviewed by the Executive Committee and entire Board of Directors. The tax returns have been timely submitted to the IRS and State of Wisconsin. We have posted the audit report and IRS Form 990 to the NNPDF Foundation Financials and Forms under the “About US” section of the website.

According to the independent audit report, in 2014 the NNPDF received $384,097 in income through contributions, grants, fundraising, registration fees for the Annual Conference, and smaller miscellaneous amounts. In 2014 the NNPDF had $548,946 in expenses. Of that expense amount, $297,071 was for research grants. The funds for the research grants have accumulated from fundraising income during the past several years. Over 54% of the expenses during 2014 were for research. Another $146,916 of the expenses were for family support – the Annual Conference, printing and postage, and related salary costs to help each family with information and resources to support a loved one with Niemann-Pick Disease and those families who have suffered a loss. Over 27% of the 2014 expenses were for family support. Combined, research payments and family support accounted for over 80% of the 2014 annual expenses.

If you have any questions related to the annual audit or the IRS Form 990, please contact the Finance Committee. Jill Flinton, as Finance Committee Chair, can be reached at Other members of the Finance Committee and Audit Team are Wayne Palmiter, Anne O’Connor Smith and James Thompson.


Jill Flinton*

Finance Chair 

National Niemann-Pick Disease Foundation

*Mom to Daniel Flinton (NPC) ~ 12/07/2006 ~ 11/11/11

Jill has served as the Finance Committee Chair since 2013.

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A Message from Elissa Miller-Visoky, Research Committee Chair
Dateline: Dec 4th , 2015

Elissa Jack
Elissa Miller-Visoky
Mother of...
... Jack Visoky

December 4th , 2015

Hello NNPDF Family Members & Supporters,

The National Niemann-Pick Disease Foundation (NNPDF) firmly supports and promotes research to find and accelerate a cure or treatment for all types of Niemann-Pick Disease.  Through our community and foundation fundraising efforts, the NNPDF works to ensure that research funding is appropriately allocated among the various types of Niemann-Pick Disease (NPD). [Niemann-Pick Disease Types A, A/B and B, also known as, Acid Sphingomyelinase Deficiency (ASMD), and NPD Type C].

The research projects are jointly funded by the National Niemann-Pick Disease Foundation and the Canadian Chapter of the National Niemann-Pick Disease Foundation and is made possible in great part due to the efforts of our NPD families and their extended support network via local community-sponsored events. The NNPDF and CCNNPDF are truly grateful for this collaborative support throughout the USA and Canada.

To work towards these goals, the NNPDF funds pre-doctoral, post-doctoral, and early career investigator research fellowships and grants.  The NNPDF offers two Fellowships:  The Edward H. Schuchman ASMD Fellowship and the Peter G. Pentchev NPC Fellowship.  Request for Applications (RFA’s) for these fellowships are usually announced in March of each year and the deadline for submission of applications is usually in mid-May.  In order to attract high quality applications, the research program is widely publicized and targets clinicians and scientists working in the field of NPD and ASMD, researchers and labs working on other lipid storage diseases and other relevant areas of science.

The NNPDF maintains a commitment to only fund high quality research.  To ensure this is accomplished, the NNPDF utilizes the expertise, advice, and valuable time of our Scientific Advisory Board (SAB).  The SAB members are wide-ranging and have expertise in the areas of pediatric neurology, genetics, physiology, human nutrition, metabolism and cholesterol trafficking, molecular and cell biology, biochemistry, etc.  The SAB gives guidance to the NNPDF's Board of Directors in determining policies and funding decisions related to research

This current year, 2015, the NNPDF had enough funding to send out a request for fellowship applications for the Peter G. Pentchev Research Fellowship for NPC patients.  There was not enough funding in 2015 to request applications for the Edward H. Schuchman ASMD Fellowship.  However, it is worth noting that last year (2014), Dr. Melissa Wasserstein, of Mount Sinai Medical Center received a two year $100,000.00 research grant for her project “Niemann-Pick Disease:  Genotype/Phenotype Analyses and Molecular Based Therapy.”  This project will remain on-going throughout its second year.

With regard to the 2015 the Peter G. Pentchev Fellowship, the NNPDF had approved research funding in the amount of $160,000.00.  We had a total of 12 research applicants:  7 Post-Doctoral Applications, 3 Pre-Doctoral Applications, and 2 Early Career Investigator Applications.  At the 2015 Family Conference, the SAB and NNPDF Research Committee met and reviewed the applications to determine which research may best be applied as we look to accelerate the pace toward effective treatments and a cure for all types of Niemann-Pick Disease.  Some aspects that were considered in funding applicants were the significance, soundness of approach, feasibility and projected scientific impact of the projects.  Based on the above criteria, it was decided by the NNPDF with the assistance of the SAB to fund Ofer Modalvksi, PhD, a two-year $90,000.00 Post-Doctoral Research Fellowship for his project titled “New Perspective on Niemann-Pick C Disease as an mTORC1 Dependent Metabolic Disease.”  Further, extension funding in the amount of $50,000.00 was awarded to Xuntian Jiang for his project titled “Development of a Diagnostic Test and Newborn Screening for Niemann-Pick C Disease.” 

Further, there was discussion during the family conference to partner with other NPD patient and research organizations to offer partial funding in the amount of $20,000.00 for a research applicant whose proposal showed great promise.  The NNPDF is working to find additional funding resources. 

Finally, it is worth noting that earlier this  year, Dr. Andrew Munkacski was awarded a $20,000.00 research extension for continuation of his three year project titled, “Defining the molecular basis of HDAC inhibitors to treat murine, feline, and human models of NPC.”  Moreover, Dr. Charles Vite continues to utilize an extension of his funding from 2013 to study his NPC Cat Colony “Fellowship of the Cats II.” 

For additional and more detailed information regarding the NNPDF Research Strategy, current NNPDF Funded Research, current NNPDF Research Committee members, or members of the foundation Scientific Advisory Board, please utilize our NNPDF Home Web Page which provides comprehensive information on these topics or follow the direct links below.


Elissa Miller-Visoky *

Research Committee Chair
National Niemann-Pick Disease Foundation
*Mother to Jack Visoky (NPB)

Dated December 2015

Elissa has served as the Research Committee Chair since 2015.

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A Message from Becky McGuire, Development Committee Chair
Dateline: June 8th , 2015

Becky McGuire Kelly
Becky McGuire
Cousin of...
... Kelly Thompson

June 8, 2015

Hello NNPDF Family Members,

This week the Board of Directors wanted to provide you with a Development Committee update.  The Development Committee is responsible for guiding the comprehensive plan of fundraising and awareness efforts of the NNPDF. Recently the main focus has turned to the redesign of our current web site. This was based off of previous feedback from the membership that the resource was not being utilized effectively. The NNPDF Board of Directors and Central Office staff unanimously agreed with the membership that this needed to become a priority.

During the summer of 2013, as a board member with a marketing/public relations and communications background, I personally ran focus groups that were open to family membership, scientists, doctors and board members. Three focus groups were run with these audiences to identify the issues with the current website.  Once the issues were brought to the attention of the Development Committee, we began the process of the redesign. This process includes reviewing our current web site and all its layers. This is a time consuming process as I have personally been able to experience leading two web redesigns for other institutions.

Currently, our needs have been identified, proposals from vendors have been received and we are reviewing them to make the best decision for the foundation with our membership and potential families as our primary targeted audience. We are making progress and will continue to provide updates.

Another large focus of the Development Committee is the creation of a tiered fundraising support document. This document can be found here (Fundraising Services Plan). This initiative is directed by our current standard operating procedures. We as a committee need to determine a way to enhance ongoing initiatives, identify new fundraising/ awareness initiatives, evaluate these initiatives and assess effectiveness and feasibility of support services from our central office staff. Our first step in following through with these procedures and directing our efforts was creating guidelines so we support fundraisers in a fair and effective manner.

I am excited to share this document with you and look forward in helping our membership have the most success for families and the NNPDF in their fundraising efforts. This guiding document serves to help set clear expectations and acts to hold ourselves (the NNPDF) responsible for proper support for all fundraising efforts.  As the Development Committee Chair, I am always looking for ways to support our membership’s fundraisers. If you know of a fundraiser or would like to hold a fundraiser, please contact our central office or myself, so we can make sure we are supporting you to the best of our ability and aligning with the our foundation’s mission to support and promote research to find a cure or treatments for all types of Niemann-Pick Disease and provides support services to individuals and families affected by the disease.


Becky McGuire *

Development Committee Chair
National Niemann-Pick Disease Foundation

*Cousin to Kelly Thompson (NPC), age 36

Becky has served as the Development Committee Chair since 2014.

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A Message from Jill Flinton, NNPDF Finance Chair
Dateline: April 16th , 2015

Jill Daniel
Jill Flinton
Mother of...
... Daniel Flinton, NPC 
12/07/06 - 11/11/11

April 16th, 2015

Hello NNPDF Family Members,

This week the Board of Directors wanted to provide you with a Finance Committee update.  The Finance Committee is responsible for continually reviewing the financial affairs of the NNPDF during the year, preparing the budget, reviewing any anticipated expenses, and communicating the financial condition of the NNPDF to the Executive Committee and NNPDF Board of Directors.

During 2014, the NNPDF was subject to a third-party financial review conducted by SVA Certified Public Accountants, S.C.  After extensive review and discussion, all the recommendations and resolutions were presented to the NNDPF Board of Directors in March 2015 at the Board of Directors meeting. More information about that review, including a summary of the recommendations and the resolution of those recommendations, can be found at the link below.  This summary is also being posted to the Finance page of the website.

Click here to view the SVA Review Findings Response and Resolutions - Scroll to Bottom of page

Every year, the NNPDF also has an audit performed.  This audit is conducted by an independent public accountant and is required to maintain our tax-exempt status, as well as, to apply for financial grants to fund specific non-research projects. In 2014, the annual audit for 2013 was conducted by the firm of David L. Scrima S.C.  This firm also prepared the 2013 IRS Form 990 tax return which was previously posted on the Finance page of the website.  This audit was planned and performed by the firm to obtain a reasonable assurance that the financial statements were free of material misstatements.  In their opinion, the financial statements fairly presented the financial position and operations of the NNPDF.  The audit and the tax returns were presented to the Executive Committee and NNDPF Board of Directors for review.  The audit is now being posted to the Finance page of the website.  Future audits and tax returns will be posted to the NNPDF website after being reviewed by multiple teams and committees and the NNPDF Board of Directors.

Click here to view the Scrima audit and 2013 Audit 990 - Scroll to bottom of page

While in Chicago at the Board of Directors meeting, the preliminary 2015 budget for the NNPDF was presented by the Treasurer/Finance Chair and questions were answered from the Directors and the NPD family in attendance. The Finance Committee and the Research Committee collaborated to determine the amount of funding which would be available to fund new research.  The Research Committee will review the funding applications this summer and a final decision on the particular research projects will be made in August.  The currently funded research can be reviewed on the Research page.  In a Board member only session, the salaries for the NNPDF staff were discussed and approved for the 2015 year.  With the research and salaries decided, a revised budget was presented again to the Board of Directors by the Treasurer for approval.  The revised budget was approved by the Directors.  The budget is an estimate of the costs and revenues for this year.  Certain costs are separately reviewed by the Finance Committee, even if they are included in the approved budget.

The Treasurer/Finance Chair also requested Board of Director approval to engage the firm of David L. Scrima S.C. to prepare the 2014 audit and IRS Form 990 tax returns. The Board of Directors approved the retention of this firm.  Upon completion of the 2014 audit in early 2015, the audit report and IRS Form 990 will be sent from the auditor to key members of the NNPDF Board.  Once the reports have been reviewed they will then be forwarded to members of the Executive Committee and ultimately the full Board of Directors for their review, prior to posting to the NNPDF web site.  Good business practice includes evaluating, and changing, audit firms every few years.  That evaluation will be conducted in 2015 by a subset of Board members.

The Treasurer, Finance Committee, and Board of Directors are always monitoring the financial operations and condition of the NNPDF and making sure that all the hard earned fundraising dollars are dedicated to the NNPDF mission of supporting and promoting research and providing support services for those affected by all types of Niemann-Pick Disease.



Jill Flinton*

Finance Chair 

National Niemann-Pick Disease Foundation

*Mom to Daniel Flinton (NPC) ~ 12/07/2006 ~ 11/11/11

Jill has served as the Finance Committee Chair since 2013.

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A Message from Lisa Chavez, NNPDF Nominations Chair
Dateline: March 31st, 2015

Chavez Breann Chavez
Lisa Chavez
Mother of...
...Breann Chavez, NPC
2/10/03 - 6/8/06

March 31st, 2015

Hello NNPDF Family Members,

Each year the National Niemann-Pick Disease Foundation (NNPDF) Nominations Committee takes time to review and evaluate the needs and projects that each committee, within the foundation, is charged with accomplishing in the upcoming year.  Nominations committee members look within our current board membership to ensure that we have the appropriate skilled volunteer board members engaged with the foundation to complete these tasks. The Nominations Committee also works to evaluate and implement leadership secession planning, overall diversity of the Board and the needs within the NPD community membership we support and which are the foundation’s key stakeholders. The current standing committees of the NNPDF are:  Finance, Development, Nominations and Research.  


After this annual assessment, Nominations committee members reach out to individuals within our NPD community and our networking circles who have the skills and/or experience which best fits the areas of need which have been identified by each committee. We work to evaluate resumes and letters of interest from those we have reached out to, along with the credentials and statements of interest from those who have contacted the NNPDF and indicated their desire to learn more about serving as a volunteer member on the board. The Nominations Committee then invites, selected applicants to our face-to-face Board meeting, where potential candidates are able to get a better understanding of the commitment we make as Board members and the work we do. It is also an opportunity for Board members to get to meet the candidates recommended by Nominations Committee.  

In the weeks following our Board meeting, we then ask the full Board to vote on each candidate presented. Once the Board has voted to approve a candidate, we then approach that candidate to insure that their interest remains, after having spent time with us and seeing how our Board functions along with understanding the level of commitment required. Once both sides have agreed, we welcome our new members to the board, orient them to board functions, inner-workings and responsibilities and get to work!


As Nominations Committee Chair for 2015, I am pleased to announce the following new members to the NNPDF Board of Directors:

  • Anne O’Connor Smith
  • Heather Taillefer 
  • Tammy Vaughan
To find out more about the new NNPDF Board Members: Click Here

As we welcome our new members for 2015, we also had to say goodbye to members that have reached the end of their second term with the foundation board and are now required to step down for a year. In 2006, the NNPDF Board of Director’s made two significant revisions as to who may serve on the Foundation board and what the length of that term would be. The first revision addressed and implemented was that spouses could not serve as Board members during the same time, prior to this period the Board was made up primarily of couples serving together.  The second revision was to define Board member’s term serving on the Board. Today, our Board members may serve two consecutive terms of 3 years for a total of 6 years on the Board.  At the end of the first 3-year term, the interested board member will indicate their desire to continue serving on the board for a second term.  The board member notes their interest to continue serving to the full board highlighting their continued interest, past activities and future goals.  The Nominations committee then present these renewal candidates to the board, a vote is then taken by the full Board at the end of the first term as to their fellow board member continuing on to serve a second 3-year term. Once Board members reach the end of their second term, they are required to take a mandatory year off from serving on Board. The following year, if the member would like to request being reinstated, that request is presented to and voted upon by the full Board, along with other potential candidates and those wishing to serve their second term.


This year we had three Board members come to the end of their second term and will be stepping down to take off the mandated year leave. We will greatly miss the insight and perspective they each brought to the Board having been active members for the past 6 years and thank them for their commitment.


These members are as follows:

  • Sandra Cowie
  • Ryan Kelly
  • Darrile Papier  
To find out more about our esteemed previous Board Members: Click Here

We are however, pleased to say that the following Board member, Becky McGuire, was voted to continue serving her second term on the Board.


As a Committee, we are also responsible for recommending the Slate of Officers for 2015, so that Board members can vote on the leadership. The Slate of Officers for the NNPDF is comprised of Chairman, Vice Chairman, Secretary and Treasurer. Each of these Foundation Officers, along with the Chair of each committee mentioned above, further comprise the NNPDF Executive Committee. Other members of the Board are designated as Directors-at-Large. The Executive Director is included in many of our meetings as an ex-officio member but does not have any voting rights or participate in any closed meetings of the board.


The following is our State of Officers for 2015:

  • Chair - Leslie Hughes
  • Co-Vice Chairs - Lisa Chavez and Wayne Palmiter
  • Secretary - Nicole Farhat
  • Treasurer - Jill Flinton
To view the full 2015 NNPDF Board of Directors Roster: Click Here

As we welcome on our new Board members and introduce them to you, we would also like to welcome a new staff member, Chris Klauer. Chris will serve as our Family Services and Marketing Coordinator. This is a newly created staff position that we have worked to define over the last year. Chris will support marketing and communication to Board members, families, grant reviewers and other constituents. Chis will also be helping to coordinate and support the needs of NNPDF families and assist the Executive Director in planning and preparing for our 23rd Annual NNPDF Family Support and Medical Conference, which will be held in Chicago IL, August 6th – 9th, 2015. We look forward to many of you meeting Chris in person at that point.  The Board members had a chance to meet Chris a few weeks ago at our annual Board meeting and are all very excited about the expertise and experience that she brings to our organization. 


You can find a list of our Current Board members and Office Staff by clicking on the 'About us’ located on the right of our home page and choose “Meet the NNPDF Board” at: .


As Board members we work to maintain an organization that was created over 23 years ago, with the goal to simply come together, interlocking our strengths and creating a unified body that will fight together against NPD.  To look back and see how far we have come, as a community and in research, thanks to all those founding families it is simply incredible to see where we are today.  You think of those first families, licking a stamp and hoping for a return weeks later, to now have the advantage of connecting to each other and researchers with a click of a button, often resulting in immediate responses ~ it is simply….astounding.


What an exciting time to see the progress we have made along with the forward momentum towards research and clinical trials that still moves all towards that elusive cure. We aren’t there yet, but what a thrill it is to stand alongside other established NPD organizations and our NNPDF family membership to run this leg of the race, knowing that together we will win this fight against Niemann-Pick Disease!  



Lisa Chavez*

Nominations Chair

Board Co Vice-Chair  

National Niemann-Pick Disease Foundation

*Mom to Breann Chavez (NPC) ~ 2/10/2003 - 6/8/2006

Lisa was elected to the NNPDF Board Vice Chair position in February 2014 and also serves as the Nominations Committee Chair.

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A Message from Leslie Hughes, NNPDF Board Chair
Dateline: March 24th, 2015

Leslie Hughes Riley Corbitt
Leslie Hughes
Great-Aunt of...
...Riley Corbitt, NPC

March 24th, 2015

Hello NNPDF Family Members,

The National Niemann-Pick Disease Foundation (NNPDF) Board of Directors is pleased to announce a new feature to the NNPDF web site titled, ‘From the Board’. This web page has been created as a way for you to get the latest updates directly from the members of your Board as to the work which is addressed at the foundation and within the various committees. The Board is continuously looking for ways to best communicate information and updates. This is the first of upcoming messages from your ‘Board of Directors’ over the next few weeks and months ahead and we will continue to provide updates periodically as to the “happenings” of the Board and foundation as we move on through the year. 

Your NNPDF Board of Directors recently held the Foundation’s Annual Board meeting in Chicago, Illinois from Thursday, March 12th through Saturday, March 14th, 2015. Historically, the NNPDF annual meeting is held in late January or early February, however, this year we had the opportunity, through a restricted “Patient Advocacy Leadership” (PAL) grant from Genzyme, to incorporate a day-long seminar dedicated to nonprofit board development. The grant application was written to include, not only the NNPDF members of the board, but the Board of Director’s of the Canadian Chapter of the National Niemann-Pick Disease Foundation (CCNNPDF).  In choosing to hire an appropriate Board Retreat/Seminar Facilitator, three highly recommended organizations were interviewed by a seminar team comprised of NNPDF Executive Committee members, the foundation Executive Director and the CCNPDF Board Chair. The entire Board and Executive Director were also required to complete pre-seminar work to assist the facilitator in identifying topics to focus on further during the seminar sessions. Immediate feedback from the seminar participants note that the seminar and work sessions were extremely beneficial in providing further insight into leadership roles and future skill-building opportunities accessible to the Foundation Board.

During our annual meeting, the foundation annual business plan and program updates, goals and strategies are shared, fine-tuned and voted upon solely by the current sitting members of the NNPDF Board. Individuals associated with the NNPDF, who had previously indicated their interest in learning more about the role of a NNPDF board member, had submitted a “letter of intent” and resumes to the Nominations Committee for review.  These candidates were then invited to attend the annual meeting to learn more about the Board functions, meet the Board members and also provides an opportunity for the current members of the Board to meet and learn more about the prospective candidates. The Nominations Committee Chair will be providing an update shortly as to the Foundation’s Board member process and an announcement as to the 2015 NNPDF Board of Directors.

We were very excited to have Jim Green, President of the International Niemann-Pick Disease Alliance (INPDA), of which the NNPDF is a co-founder, and Dr. Andrew Lieberman, Chair of the International Scientific Advisory Board, join our meeting for the weekend. Jim provided a thought-provoking and inspiring presentation on International Opportunities and Challenges for Progress in Niemann-Pick Disease. In addition to attending the board meeting discussions, Dr. Lieberman, also participated in an early morning Research committee meeting. A member NPD family was also in attendance who shared important insights and perspectives with board members. We were very appreciative to receive their input and feedback.    

This year’s annual meeting had many components that I have not experienced during my five years as a member of the board.  These components led, from my perspective, to an interactive, learning and skill-building exercise. Here are a couple of facts that many may not realize…….over these three days in March, the time devoted towards meetings/seminar totaled approximately 17 hours in which the NNPDF and CCNPDF board members participated.  This did not include travel time to and from the Chicago, Illinois destination. All members of the NNPDF Board of Directors are volunteers and have full time careers requiring all to take time off from these job responsibilities to attend the annual meeting. Weeks in advance to the meeting, ongoing conference calls lasting from 1 to 2 hours each are held by the Committee Chairs and participants include:  Committee Members, the Executive Committee, as well as, the NNPDF office staff, all in support of developing and updating the NNPDF programs, plans and strategies. All current Board members have a personal connection with Niemann-Pick Disease of all types, either as an individual diagnosed with NPD or who have a family member affected by the disease. Your current board consists of members who come from all walks of life, reside across the entirety of United States, from Coast to Coast and all States in-between, and include representatives from Canada as well.

In closing I, along with the Board members, would like to acknowledge the staff of the NNPDF central office for their dedication, hard work and support in working with the Board to make the annual meeting and seminar a success. Thank you to the CCNPDF for their valuable participation and input. And a special thank you to all of the NNPDF board members for their dedication and commitment.  


Leslie Hughes

Leslie Hughes*

Board Chair

National Niemann-Pick Disease Foundation

*Great Aunt of Riley Corbitt (NPC ~ 7/27/02-10/29/08).        

Leslie was elected to the NNPDF Board Chair position in February 2014.

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[June 8th, 2015 ~ blg]