Mary Payton’s Miracle Foundation was formed in March of 2008 in honor of Mary Payton Vigil, a resident of Mandeville, Louisiana. Mary Payton is a beautiful five year old girl who was diagnosed at the end of January 2008 with Late Infantile Neuronal Ceroid Lipofuscinosis (LINCL), also referred to as Batten Disease (www.bdsra.org).Mary Payton’s Miracle Foundation was formed by a group of people local to the Mandeville-Covington area. Some of our children have been in class with Mary Payton, some have known Joe and/or Nikki since childhood, and some of us had never met them until the foundation was formed. All of us are working together for one common cause: A cure for LINCL.
Mary Payton’s Miracle Foundation is a 501c3 non-profit corporation. Federal Tax ID # 51-0672577. We have a mission statement, a vital mission, and the determination to accomplish our goals. We will help all children affected by LINCL.
Our Mission
The mission of this foundation is to help provide funding for treatment to families whose lives have drastically been altered due to this devastating disease. We will provide support for research in order to one day find a cure for LINCL so that no child will have to bear this burden. We envision a world where every child affectedby Batten Disease will receive treatment to relieve symptoms of the disease and potentially reverse it's devastating effects. We will raise national awareness of this disease through news media, word of mouth, email and whatever deemed necessary in order to increase funding for research and make it possible for miracles to occur. MPMF will raise funds and awareness through grants, fundraising events, public and private donations to ensure support for families who need assistance is available. We will provide grant opportunities for families whose lives have been unalterably affected by LINCL. Mary Payton's Miracle Foundation believes that providing support for research to occur will lead to an eventual cure for LINCL. As people become aware of the disease and share their resources, knowledge and skills, a network dedicated to the hope for a cure will grow. We are determined and will not give up.
Accomplishments
Just a few things I would to bring to your attention as far as our accomplishments to date.
Since our first benefit, October 3, 2008 we have raised over $400,000.
We have financial assisted 6 families in 5 different states across the country donating more than $100,000.
We have contributed to the development of a screening test offered
today in doctor's offices around the country, that will allow
prospective parents to be screened for over 400 orphan diseases, 1 of
them being LINCL. This is an important step in eradicating Batten's
disease.
Just a few side notes:
2008 Miracles Can Happen Gala hosted over 500 guests
2009 Race for A Miracle Hosted near 500 guest
2009 Miracles Can Happen Gala hosted near 500 guest
2008 Race for a Miracle hosted 300-400 guests
Saints Season tickets Raffle, we sold more that 500 tickets raising near $25,000
These
accomplishments are huge! Our small foundation has taken a big step
forward in the world of Batten Disease! None of this would have
happened without YOU, your dedication and your
selflessness to make a difference in the lives of children and families
fighting this horrible disease.
A big Thank You to all who have been about of our cause!
Families in Need of Assistance
If you are a family with a child who suffers with LINCL and need support, please submit this assistance application form.
Officers
Secretary
Lena Liller
lena@marypaytonsmiracle.com
Board Members
Chris Faler - Chairman
chris@marypaytonsmiracle.com
Blake Boudreaux
blake@marypaytonsmiracle.com
Leanne Deibel
leanne@marypaytonsmiracle.com
Nick Deluzain
nick@marypaytonsmiracle.com
Kris Muntan
kris@marypaytonsmiracle.com
Nikki Voelkel
nikkiv@marypaytonsmiracle.com
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