Prader-Willi Syndrome Association
8588 Potter Park Drive
Suite 500
Sarasota FL 34238-5471
Mission
PWSA(USA) is an organization of families and professionals working together to promote and fund research, provide education, and offer support to enhance the quality of life of those affected by Prader-Willi syndrome.
Leadership
CEO/Executive Director Mr. Ken Smith
Board Chair Mrs. Michelle Torbert
Board Chair Affiliation Volunteer
General Info
Tax Exempt Status Public Supported Charity
Incorporation Year 1977
State Charitable Solicitations Permit Yes Jan 2017
State Registration Mar 2017
IRS Letter of Determination
View
Financial Summary
 
 
Projected Revenue $1,259,281.00
Projected Expenses $1,169,281.00
Impact Statement

2015 Accomplishments:


· New Parent Mentoring Program— Due to an increasing number of new diagnoses, restructured the program that is serving the families of newly diagnosed persons with PWS. Went from one to two part time staff persons and added a dozen volunteer new parent mentors who work closely with five families each.

· Recruited Mayim Bialick, actress from the “Big Bang Theory” to serve as a national spokesperson for PWSA (USA). Ms. Bialick is promoting PWSA (USA) and PWS awareness through her social media channels.

· Added a fundraising special event featuring Clint Hurdle, Manager of the Pittsburgh Pirates baseball organization. This annual event is held during spring training and has helped to expand our revenue channels.

· Created an enhanced tracking system for crisis, medical, and family support calls we receive. This has allowed us to better track the types of calls and demands on our staff so that we can focus resources where they are most needed.

· Added a contract education specialist to better serve our PWS families of school aged children. This person and our other family support staff provide support to families, school districts, and school professional staff on IEP’s for students with PWS. This increased specialized resource will help provide the support needed for this important life-stage of those with PWS.

2016 Goals:

· Create a robust series of educational webinars (10-12) for families to assist them with a number of issues including, transitioning to adulthood, school issues, behavior challenges and other helpful topics.

· Increase to 200 the number of newly diagnosed persons with PWS that we provide support to during the year.

· Complete fundraising for and begin the oxytocin phase 2 drug study research initiative.

· Create and implement a national PWS awareness campaign utilizing social media to educate the public about Prader-Willi syndrome.

Needs Statement

 

  1.        Research-PWSA (USA) will be funding an exciting research study. This is an oxytocin phase 2 study for a drug that has shown tremendous potential for children with Prader-Willi syndrome. While over $650,000 has already been raised it is short of the $1M goal to have the full number of subjects enrolled. Need $350,000

 

2      2. Cover the cost for paying for a child with PWS to an acute care       program that serves PWS children in crisis. Cost $1,000 per child       with an annual need of 25 children. Cost $25,000.

3.       3. If there is a medical emergency involving someone with PWS, our       organization responds during business hours by contacting       physicians and hospitals. We provide critical information that       outlines the unique care and issues relating to PWS. We do not have       resources to answer these calls in the evening and during weekends.       We would like to implement an after-hours answering service that       could assist during these times. Cost $10,000.

4.       4.  There is a growing demand for our medical and family support       counselors as we are now handling over 2,000 calls a year. We need       to hire an additional part time counselor to help handle the growing       call volume. Cost $20,000.

5.       5. PWSA (USA) needs to create a “Parent Perspective” video that can       be shared with residential care home providers for training purposes.       This video will help providers better understand and develop more       effective relationships with parents of adults with PWS that the       provider serves. Cost $10,000.

Background Statement
The Prader-Willi Syndrome Association was established in 1975 and then incorporated in 1977.  By 1978, publications were being released and the first national conference was held in 1979.  The organization was run by volunteers until 1984 when the first paid staff were hired.  The first PWSA scientific conference was held in 1985 in conjunction with the national conference.  In 1991, the first international PWSA conference was held in Holland.  The national office moved from Missouri to Sarasota, FL in 1997.  Although the first office was in Siesta Key, the organization is now headquartered on Potter Park Drive in Sarasota.
 
PWSA (USA) provides family and crisis support to those who have PWS and their families.  The organization provides counseling for behavioral emergencies, assistance with school IEP's (individual education plans), information regarding nutrition and food security, and much more.
 
In addition to direct support, PWSA consults with physicians, providers, and other professionals to share information regarding the uniqueness of this rare syndrome and develop resources that can be utilized during emergency situations as well as routine care.  PWSA  funds research and has a network of specialists throughout the country.  There are chapters in approximately 42 states that connect people and partner organizations on a local level.
 
 The Scientific Advisory Board (SAB), formed in 1980, is responsible for approving and overseeing research grants. It is comprised of twelve professionals in the fields of medicine, research, and psychology. They donate their time and talent to review all research applications, coordinating Scientific Day at the national conference, and work with the Executive Director on research collaboration. PWSA (USA) plays a strong role in networking researchers, and advocating on a national level for appropriate research.
 
The Clinical Advisory Board (CAB) is comprised of approximately 15 physicians who voluntarily provide the organization with appropriate medical guidance.
Areas Served
Areas Served
Area
Throughout the United States
National
Areas Served Comments
PWSA (USA)'s headquarters is located in Sarasota, FL.  The organization serves individuals with PWS, their families, physicians, providers, and other professionals throughout the United States.
Service Categories
Primary Org Type Human Services
Secondary Org Type Mental Health & Crisis Intervention
Tertiary Org Type Medical Research
Statement from the Board Chair/Board President

To our members, donors, PWS families and supporters:

2015 was a banner year for PWSA (USA) and our Prader-Willi syndrome (PWS) families. We saw significant growth in our fundraising revenue with added activities and an increased number of donors. This helped the Board to increase the services we provide to the growing PWS community.

The33rd Annual Prader-Willi Syndrome Association (USA) National Conference that I co-chaired was a huge success. Over 800 health professionals, researchers, caregivers, providers, family members and people with PWS gathered in Orlando to learn the latest in research, treatment and support programs for people with PWS. We appreciate all of the people who participated in this event and were able to provide webinars on many of the topics covered for those who were not able to attend the conference.

The Board authorized a major research initiative for an oxytocin phase 2 study and has raised well over $600,000 for this study that will be underway in the last half of 2016. The international PWS community has stepped forward to help provide the necessary funds to launch the research study.

The Board continues to address the challenges that face the PWS community. In 2015 we provided support to over 2,000 families who contacted us with medical and support issues affecting those with PWS. This was an all-time record number and we are on pace to have an even greater demand in 2016. Contacts from families with newly diagnosed loved ones with PWS also hit a record number with 173 people supported by our organization. Like our overall support services we anticipate a new record number will be provided support by our organization in 2016.

The Board is working to have the infrastructure and revenue in place to continue to meet these growing demands. That is why we are so grateful to the Community Foundation of Sarasota County and the Patterson Foundation for providing the 2016 Giving Challenge.

I want to personally thank each and every one of the individuals, families, companies, and organizations who support us and stand with PWSA (USA) in our efforts to provide help to people with PWS and their families. As the mother of a daughter with PWS I know first-hand how your financial support makes all the difference in the world in our lives.

Thank you,

Michelle Torbert

Chairman of the Board

Statement from the CEO/Executive Director
Dear Prospective Donor:
 
The Prader-Willi Syndrome Association represents a syndrome that is the leading genetic cause of life-threatening obesity in children and adults throughout the United States.  We are here throughout the lifecycle of a child, providing hope to parents who have a child that has just been diagnosed with PWS, giving parents information and resources while their infant is in the neonatal intensive care unit (NICU), providing parent mentors for new parents so they are getting support from other parents who have been through a similar experience, supporting families and their children through the school years, teaching parents to be advocates for their child, providing information on nutrition and food security, and then providing assistance with issues such as residential placement and employment.  And there is so much more.  Our organization holds the hands of parents and their children throughout the child's entire life.  Our family support counselors are available to help with educational and behavioral issues.  Our medical staff are available to provide informaiton and resources to physicians and other caregivers.  Our research staff are a conduit for information relating to PWS that comes from around the world and sharing it with physicians and other appropriate individuals or organizations who are caring for those with this syndrome.
 
All of this is done utilizing donated dollars, grants, and income from special events.  PWSA (USA) is not a goverment agency and is not funded by the government.  Every single dollar raised is critical to ensuring the success of this organization in meeting its goals and accomplishing its mission.  Every dollar gets us closer to a cure, closer to access to better care, and closer to a more independent and quality life for those living with Prader-Willi syndrome.
 
Our need is real.  Our need is immediate.  The time to help is now.
Programs
Description

The PWSA Family and Crisis Support program includes counseling and resources related to situations such as legal, behavioral, school, or placement issues. It can also include assistance with obtaining needed benefits such as Supplemental Security Income (SSI) or Medicaid.

Budget $350,000
Category Human Services, General/Other Human Services, General/Other
Program Linked to Organizational Strategy Yes
Population Served General/Unspecified Families Children and Youth (0 - 19 years)
Short Term Success
Short-term successes include interventions that save lives, assist in helping a child receive an education, and even work that results in parents who were considering adoption choosing to keep their new infant that has been diagnosed with this rare syndrome.  Short-term successes are critical for our families and caregivers.  However, we also realize that early intervention can lead to long-term healthier children who are less likely to be obese and who are able to live a longer and higher quality life.
Long Term Success

The PWSA Family Support program is unique among the rare disease communities. PWSA is happy to report positive feedback as the organization shifts from a crisis counselor model to a more comprehensive Family Support model. This allows more comprehensive support services, consistent communication, and collaboration between medical, nonmedical and crisis service providers.  There is a new family support counselor that helps Spanish speaking families. We continue to evolve to best meet the emerging and changing needs of the PWS community.

•The program handles an average of  1500 annual crisis cases. •The top six issues are Advocacy (29%), Medical (26%), School Issues (15%), Behavior (11%), New Diagnosis (7%), Placement Issues (6%). 
 
Crisis funds provide PWS training for schools and residential programs, transportation for children and adults needing specialized PWS treatment at The Children’s Institute, and legal consultations for individuals with PWS involved in a legal crisis.
Program Success Monitoring
Tools that enable PWSA to track success include evaluations, surveys, counselor notes, and information obtained from physicians and families related to patient weight and longevity.
Program Success Examples
Historically, children born with Prader-Willi syndrome had short life expectancies.  In addition, children with PWS presented with similar physical characteristics that made PWS visually evident.  Due to our organization's research and the education and awareness we have brought to our families and professionals regarding early interventions, the importance of growth hormones, and other significant information, children with PWS are living longer lives, they are healthier, and we are literally changing the face of Prader-Willi syndrome.
Comments
Program Comments by Organization
PWSA is proud of its commitment to all those affected by Prader-Willi syndrome.  Many national headquarters of organizations focus on policy, guidance, and administrative issues.  The national headquarters of the Prader-Willi Syndrome Association provides direct care to individuals with PWS and their families, and reaches out to healthcare and other professionals with lifesaving information and resources.  We have built bridges throughout the national and international PWS community and are the leading provider of information related to Prader-Willi syndrome.  In addition, research and information related to PWS is being utilized to study hyperphagia and may have significant impact on our fight against childhood obesity.
CEO/Executive Director
CEO/Executive Director Mr. Ken Smith
CEO Term Start Nov 2013
CEO/Executive Director Email ksmith@pwsausa.org
Former CEOs/Executive Directors
NameTerm
Dale Cooper Jan 2012 - Nov 2013
Dottie Cooper Jan 2012 - Nov 2013
Senior Staff
NameTitle
Evan Farrar Family Support Counselor
Jack Hannings Development Director
Janalee Heinemann Director of Research and Medical Affairs
Ken Smith Executive Director
Staff & Volunteer Statistics
Full Time Staff 10
Part Time Staff 6
Staff Retention Rate % 91
Professional Development Yes
Contractors 1
Volunteers 40
Management Reports to Board Yes
CEO/Executive Director Formal Evaluation Yes
Senior Management Formal Evaluation Yes
Non-Management Formal Evaluation Yes
Collaborations
PWSA collaborates with a number of organizations throughout the country.  These include, but are not limited to:  The National Institutes of Health (NIH), The Children's Institute, HealthBridge Children's Hospital, Pennington Research, the Translational Research Institute, the University of Florida, various developmental disabilities organizations, Wrights Law, and many more.
Affiliations
AffiliationYear
AFP (Association of Fundraising Professionals)2000
National Organization for Rare Disorders - Member1995
External Assessments and Accreditations
Assessment/AccreditationYear
Awards & Recognition
Award/RecognitionOrganizationYear
Outstanding Support SevriceIPWSO International Prader Willi Syndrome Organization2005
Risk Management Provisions
Government Licenses
Organization Licensed by the Government No
Plans
Fundraising Plan No
Communication Plan No
Strategic Plan Yes
Strategic Plan Years 6
Strategic Plan Adopted Jan 2012
Management Succession Plan No
Continuity of Operations Plan No
Policies
Nondiscrimination Policy Yes
Whistle Blower Policy No
Document Destruction Policy Yes
Directors and Officers Insurance Policy No
Policies and Procedures Yes
Other Documents
Board Chair
Board Chair Mrs. Michelle Torbert
Company Affiliation Volunteer
Board Term Sept 2015 to Sept 2018
Board Chair Email ksmusa@gmail.com
Board Members
Board Members
NameAffiliation
Michael Alterman No Affilation
Leon Caldwell Annie E Casey Foundation
Sybil Cohen Volunteer
Tom Conway Retired
Julie Doherty Volunteer, Secretary/Officer of the Board
Dr. Dan Driscoll University of Florida
Jim Koerber No Affilation
Rob Lutz Cortendo AB
Bert Martinez Treasurer of the Board; Purvis, Gray, and Company
Tom Noonan Rimkus Consulting Group
Tammie Penta Community Volunteer
Marguerite Rupnow Prader Willi Homes of Oconomowoc
Rob Seely Volunteer
Michelle Torbert No Affilation
Denise Westenfield Community Volunteer
Constituency Includes Client Representation Yes
Board Ethnicity
African American/Black 1
Asian American/Pacific Islander 0
Caucasian 13
Hispanic/Latino 1
Native American/American Indian 0
Other 0 0
Board Gender
Male 9
Female 6
Unspecified 0
Governance
Board Term Lengths 3
Board Term Limits 3
Board Orientation Yes
Number of Full Board Meetings Annually 6
Board Meeting Attendance % 74
Board Self-Evaluation Yes
Written Board Selection Criteria Yes
Board Conflict of Interest Policy Yes
% of Board Making Monetary Contributions 100
% of Board Making In-Kind Contributions 100
Standing Committees
Advisory Board / Advisory Council
Audit
Board Development / Board Orientation
Development / Fund Development / Fund Raising / Grant Writing / Major Gifts
Executive
Finance
Nominating
Program / Program Planning
Scientific Advisory
Strategic Planning / Strategic Direction
Fiscal Year Projections
Fiscal Year Begins 2016
Fiscal Year Ends 2016
Projected Revenue $1,259,281.00
Projected Expenses $1,169,281.00
Organization has Endowment No
Capital Campaign
In a Capital Campaign No
Campaign Purpose
Campaign Goal
Campaign Dates 0 to 0
Amount Raised To Date 0 as of 0
Anticipate Campaign within 5 years? No
IRS Form 990s
990 Extension2015
9902015
990 20142014
9902013
9902012
9902011
9902010
Form 9902009
Form 9902008
Audit/Financial Documents
Audit2015
Audit2014
Audit2013
Audit2012
Audit2011
Audit2010
Historical Financial Review
Revenue SourcesHelpThe financial analysis involves a comparison of the IRS Form 990 and the audit report (when available) and revenue sources may not sum to total based on reconciliation differences. Revenue from foundations and corporations may include individual contributions when not itemized separately.
Fiscal Year201520142013
Foundation and
Corporation Contributions
$0$0$0
Government Contributions$0$0$0
Federal$0$0$0
State$0$0$0
Local$0$0$0
Unspecified$0$0$0
Individual Contributions$916,256$804,809$405,595
$0$0$0
$380,654$80,191$294,222
Investment Income, Net of Losses$54,561$65,635$63,898
Membership Dues$73,515$33,772$44,535
Special Events$419,076$374,546$401,260
Revenue In-Kind$798,305$661,030$606,840
Other$0$0$0
Expense Allocation
Fiscal Year201520142013
Program Expense$1,192,083$855,216$1,125,783
Administration Expense$176,571$233,593$155,179
Fundraising Expense$85,855$120,064$159,304
Payments to Affiliates$0$0$0
Total Revenue/Total Expenses1.271.120.84
Program Expense/Total Expenses82%71%78%
Fundraising Expense/Contributed Revenue6%10%20%
Assets and Liabilities
Fiscal Year201520142013
Total Assets$1,980,049$1,512,024$1,375,285
Current Assets$1,895,652$1,454,043$1,322,876
Long-Term Liabilities$0$0$0
Current Liabilities$240,473$99,130$109,211
Total Net Assets$1,739,576$1,412,894$1,266,074
Top Funding Sources
Fiscal Year201520142013
Top Funding Source & Dollar AmountContributions, gifts, grants $916,256Contributions, gifts, grants $804,809Contributions, gifts, grants $405,595
Second Highest Funding Source & Dollar AmountFundraising $419,076Fundraising $374,546Fundraising $401,260
Third Highest Funding Source & Dollar AmountConference Income $377,608Conference Income $74,070Conference Income $291,881
CEO/Executive Director Compensation $50,001 - $75,000
Tax Credits No
Solvency
Short Term Solvency
Fiscal Year201520142013
Current Ratio: Current Assets/Current Liabilities7.8814.6712.11
Long Term Solvency
Fiscal Year201520142013
Long-Term Liabilities/Total Assets0%0%0%
Financials Comments
Financial Comments by Foundation Financial information taken from IRS Form 990 and audit documents.  Individual contributions include foundation and corporate support.  Federal tax returns and audited financial statements reconcile.
Nonprofit Prader-Willi Syndrome Association
Address 8588 Potter Park Drive
Suite 500
Sarasota, FL 5471
Phone 800 926-4797

THE COMMUNITY FOUNDATION OF SARASOTA COUNTY, INC. IS A REGISTERED 501(C)(3) NON-PROFIT CORPORATION. A COPY OF THE OFFICIAL REGISTRATION AND FINANCIAL INFORMATION MAY BE OBTAINED FROM THE DIVISION OF CONSUMER SERVICES BY CALLING TOLL-FREE WITHIN THE STATE (1-800-HELP-FLA) OR FROM THE WEBSITE: WWW.FRESHFROMFLORIDA.COM. REGISTRATION DOES NOT IMPLY ENDORSEMENT, APPROVAL, OR RECOMMENDATION BY THE STATE. ONE HUNDRED PERCENT (100%) OF EACH CONTRIBUTION IS RECEIVED BY THE COMMUNITY FOUNDATION OF SARASOTA COUNTY. REGISTRATION #SC-02471.