Welcome to Jenna & Patrick’s Foundation of Hope Website...
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Dear friends of Jenna & Patrick’s Foundation of Hope,
This website is dedicated to Jenna and Patrick Partington and
every child living with the disease Cystinosis. We
are happy to have this space to spread awareness about
Cystinosis, let you know what we are doing in our quest for
better treatments, and to share stories about Jenna and Patrick
and other children with cystinosis. Every few months we
hear of a child being diagnosed with this devastating disease,
and we hope the information, photos and hopeful news here bring
enlightenment and peace of mind to families who have typed
“cystinosis” into their search engine for the first time.
As you browse this site you will notice a number of links to
the Cystinosis Research Foundation website. We are proud
of our partnership with this well established organization.
Their dedication to aggressive research of Cystinosis is driven
by the wish of a 17 year old girl named Natalie. Her dream
of “having my disease go away forever” has become our dream.
Our mission is to create awareness of this rare disease and
continue to raise funds that will be directed to the doctors and
researchers who have dedicated their careers to treating
Cystinosis.
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What is Jenna & Patrick’s Foundation of Hope? We are a
voluntary, nonprofit organization made up of parents, medical
professionals, friends, relatives and others who are interested
in fighting Cystinosis. Our vision is a world where
Cystinosis is no longer a threat to a full and productive life
for children and their families. Families affected by Cystinosis
will not be devastated by the diagnosis or its impact on their
lives. Individuals with Cystinosis will have the same chance at
life as their siblings and peers to run and play, hope and
achieve, and live out their dreams.
- The
informational video about Cystinosis will be available
for viewing here by June 27th, 2008. Please check
back shortly.
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"Chip In Fore Charity 2008"
3rd Annual Jenna & Patrick's Foundation of Hope
Golf-A-Thon & Charity Golf Tournament
Friday, June 6th, 2008
Jenna & Patrick’s Foundation of
Hope was honored to be one of the children’s charities to
benefit from this year’s Chip in Fore Charity Event on June 6th,
2008. The event was hugely successful in raising funds and
creating awareness of Cystinosis. Over 120 golfers participated
in the day long event and took part in a luncheon presentation
about Cystinosis.
The informational video about Cystinosis
will be available for viewing here by July 5th, 2008.
Please check back shortly.
Video
Thanks to all
who participated and to the following tournament sponsors who
helped make this year’s event such a success.
Major
Sponsors:
Wells Fargo
Panattoni
Massie & Company
Morgan Stanley
Colliers International
Nelson Properties
Meyer Crest
ASI General Contractors
GRE, Inc.
Hole Sponsors:
Regus
Market One Builders
Waller Kaufman Sutter
Cornish & Carey
Grubb & Ellis
CBRE
Buzz Oates Real Estate
Brand Energy & Infrastructure Services
McCarthy Cook / JP Morgan
Hines
Jackson Properties
REF & Son's
Preferred Capital Advisors
Sares Regis
Real Estate Law Group / AddVenture Properties
Business Law Ventures
Ware Malcomb / Rubicon Partners
Healthcare Real Estate Services
Sierra Holdings
Perry Smith Accounting
Palmer Kazanjian Wohl Perkins |
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Since the establishment of our
foundation the overwhelming
support of family, friends,
colleagues and the community
has raised awareness about
Cystinosis. THANK YOU FOR
YOUR SUPPORT! |

The Foundation Newsletter was created
to keep our supporters and sponsors informed on upcoming
events & research developments. |

Jenna & Patrick's Foundation of
Hope has partnered with Natalie's Wish and the Cystinosis
Research Foundation. |

Join our mailing to receive our quarterly newsletter and any
research updates.

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