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Mission and Goals
Dear Periodic Paralysis Community,
The Periodic Paralysis Association (PPA) has come a long way since our inception. Through the tireless voluntary efforts of the PPA Board and small circle of exceptionally motivated volunteers, the PPA has been able to help this special community in a variety of ways, from assisting members individually to providing resources to the community at large. We have begun making great strides toward better characterizing and finding new treatments for this class of disorder.
Our goals are many and require funding greater than our conferences and other prior fundraising efforts can generate. To this end, we humbly ask you to remember the PPA in your charitable giving. A donation to the PPA is not merely a tax-deductable gift and expression of goodwill, but it is an investment in your own health.
Contributions will be used to support the following active projects:
- Web hosting fees, web development, and technical support
- Legal and accounting fees
- Biennial conference
- Patient and physician education
- Research grants
- Development of Video Documentation
- Projects We’d Love to Do but Cannot Afford:
- Medical Student and Physician Grants Donations will be used toward building grants ranging from $500 to $2,000 to develop relevant papers, scientific research, and to generate the interest of medical professionals early in their formative years in the periodic paralyses and non-dystrophic myotonias. Grants will be given at the discretion of the PPA Board.
- Translation of our Website into Spanish, French, and German.
- Establishment of Mouse Models – We are now able to work collaboratively with established researchers who have expertise in this unique research methodology.
- Genetic Testing Facility – While this may be a long-shot, the PPA is interested in establishing a genetic testing program that avoids the delays and complications of research-based testing programs. We believe that such a service would be of significant benefit to the members of the Periodic Paralysis and Non-Dystrophic Myotonia community.
Memorial Gifts, Honorary Gifts, Gifts in Celebration
Contributions made as memorial, honorary or celebratory gifts are normally made by check but any type of gift to the Periodic Paralysis Association (i.e. stocks, real estate, etc.) can be considered as such.
Memorial gifts are a powerful way to honor the life and work of someone special in your life. Families often ask that gifts be made to the Periodic Paralysis Association in lieu of flowers after the death of a loved one. Generally, the funeral home will be able to inform you of this family wish. In addition, donors can memorialize anyone with a gift at any time.
The PPA genuinely appreciates this gift as it is a tangible form of loving tribute to a special person, whether a member of the PPA or not. We provide written acknowledgement of each gift to the source of the donation.
An Honorary gift is given as a thoughtful way to honor someone special. Members’ families often contribute gifts in honor of someone who provided special care. Anyone can be honored with a special gift to the Periodic Paralysis Assocation; a special teacher, mentor, colleague, friend or family member. Please include this information and we will ensure notification to the honoree that a gift has been made in his or her honor.
Gifts in Celebration
Gifts to the Periodic Paralysis Assocation are also a thoughtful birthday or anniversary gift. Some couples choose to list the PPA for gifts in celebration of their wedding day or anniversary. Holiday gifts can also be meaningful. If you would like a tribute card sent to the person being honored, please include information and we’ll notify your special friend or family member that a gift in celebration has been made in their name.
Many companies match employee gifts to qualified nonprofit charitable organizations. These companies encourage their employees to make gifts to charities that the employees choose. The companies then agree to match personal donations with an equal or greater corporate contribution.
Contact your company’s personnel or Human Resources department to determine if your company has a matching gift program and, if so, what its rules are. Complete your employer’s matching gift form and send it along with your gift to the Periodic Paralysis Association. We will complete the form and return it to your company for processing. Send to:
Periodic Paralysis Association
155 West 68th St., Suite 1732, New York, NY 10023
Donor Bill of Rights
Philanthropy is based on voluntary action for the common good. It is a tradition of giving and sharing that is primary to the quality of life. To ensure that philanthropy merits the respect and trust of the general public, and that donors and prospective donors can have full confidence in the nonprofit organizations and causes they are asked to support, we declare that all donors have these rights:
- To be informed of the organization’s mission, of the way the organization intends to use donated resources, and of its capacity to use donations effectively for their intended purposes.
- To be informed of the identity of those serving on the organization’s governing board, and to expect the board to exercise prudent judgment in its stewardship responsibilities.
- To have access to the organization’s most recent financial statements.
- To be assured their gifts will be used for the purposes for which they were given.
- To receive appropriate acknowledgement and recognition.
- To be assured that information about their donation is handled with respect and with confidentiality to the extent provided by law.
- To expect that all relationships with individuals representing organizations of interest to the donor will be professional in nature.
- To be informed whether those seeking donations are volunteers, employees of the organization or hired solicitors.
- To have the opportunity for their names to be deleted from mailing lists that an organization may intend to share.
- To feel free to ask questions when making a donation and to receive prompt, truthful and forthright answers.
The Periodic Paralysis Association is extremely grateful for the generous support it has received to-date from corporations, organizations and individuals from across the world as we strive to help patients find a diagnosis and cure through education and engagement of the medical community.
Gifts from organisations:
- NIH National Libraries of Medicine, supporting the purchase of web servers and site development
- Taro Research Foundation
- Levitt Research Foundation
- Novartis Corporation
- International Fresh-cut Produce Association
- Fraternal Order of the Eagles (Ohio Chapter)
PPA Donations (1999 – now)
Levitt Research Foundation
$20,000 – $124,999
Abbie Louise Tuttle Trust
Bob Sokol Fund
Leilani & James Watt
Taro Research Foundation
$10,000 – $19,999
Jacob Levitt, MD
Levitt Family Foundation
Magowan Family Foundation
UCLA Video Library
$5,000 – 9,999
$1,000 – $4,999
Anne & Michael Becker
Carl Parker Mem
Dr. Mark Silverman
Edward Chamberlin/Fidelity Fds.
Patrick & Kay Cochran
Paul Eliot/Eliot Family Trust
$501 – $999
First United Methodist Church
Judy Tuttle Memorial Fund
$251 – $500
Annetta Trimble – (Joy)
Deb & Mark Harris
Mission Health System
Suzan & John Chick
$101 – $250
Allis & Clark Gwinn
Claire & Chuck Clark
Deb Greant/KU: REG Press
Emily Wentworth Low
Mr. & Mrs. Tom Verdery
Wells Fargo Community Support
$1 – $100
Belva Perry Mem. Fund
D. Weimort’s Father Memorial
Dayna & James Brown
Donald & Helen Anderson
Gary & Debra Honeycutt
Intl Union/UAW local 2413
John & Priscilla Gabany, Jr
Joyce & Marcus Graham
Leslie & Alexander Eckmann
Mary Ann Davidson
Sheila & Ed Doctoroff
Tatia Thomas Key
Tina & Joe Stark
Successful Donor Initiative: We brought Nadia Batyutenko to the 2013 Conference
Alexander Batyutenko died from Periodic Paralysis in 2012. His story can be found here.
The PPA raised funds for Nadia Batyutenko to come to the 2013 PPA Conference in Orlando. Her presence greatly enhanced the conference and we hope she can join future PPA events! Thank you to everyone whose donations made this event possible.
The PPA Board