Live Auction Lot - Demi Barrel (5 Cases) of Entres Nous Cabernet Sauvignon from Kristine Ashe Vineyards

John and I would like to introduce you to one of our exciting live auction items for this year's Hayden's Hope event.

We are thrilled to have a demi-barrel (5 cases) of beautiful Entres Nous cabernet sauvignon from Kristine Ashe Vineyards. This is a new and up-and-coming vineyard whose cabernet sauvignon has been compared to the much acclaimed Screaming Eagle, among notable others. The Entres Nous inaugural vintage quickly sold out, and thanks to Kristine, we are lucky enough to be auctioning a demi-barrel at this year's event. Kristine's wine has been lovingly grown, harvested, and barreled by a team of Napa's most talented growers and winemakers, including vineyard architect David Abreu, vineyard manager Jim Barbour, and world-class winemaker Philippe Melka. As a winner of this auction item, you will be able to design and personalize your own label for this wine. What a wonderful holiday gift this could be!

To learn more about Kristine Ashe Vineyards go to www.kristineashevineyards.com

We look forward to seeing you on November 13th!

Best,
Megan and John Pheif

We are excited to bring you this year's benefit - Picture A Cure on November 13th.

Dear Friends of Hayden’s Hope,

We are so excited to bring you this year’s benefit, “Picture –A- Cure” on November 13th. We are less than a month away and are busy making final preparations.

This year’s event brings us back to our roots as a silent and live auction benefit. The evening’s honored guest, Dr. Frederick Kaplan, head of Research at the FOP lab at University of Pennsylvania, will be giving us a brief overview of what your generous donations have done for the FOP lab this past year.

In the spirit of “Picture – A – Cure” we are having a photo booth so we can not only “picture a cure”, but also picture you – our supporters. Go on, take a portrait or a group picture…be silly or be serious… wear some props or not. Make sure you stop by the booth so we can add your picture to our “Hope Gallery” which will be on display at the event.

Finally, to help you get as excited about the event as we are, we are going to start highlighting some of our fabulous auction items via email. Look for our first preview later this week.

Please feel free to forward this email to anyone that you think would enjoy attending the event.

Event and drawing tickets can be purchased on line by clicking on the 2010 Fundraiser tab or by clicking here.


Sincerely,

The Pheif Family

Did you know?

This is the 8th year we have held a fundraiser for FOP Research.  Did you know that supporters for Hayden's Hope have raised over $850,000 dollars for FOP research?  That's amazing!!  Our goal for this year's fundraiser is to hit $1 million dollars in donations.  You can help us get there by coming to this year's event on Saturday, November 13th.  Look forward to seeing you there!

Congratulations to the Founder of the International FOP Association

Each year, the Central Florida Chapter of the Association of Fundraising Professionals (AFP) honors individuals and corporations that have made a difference in our communities. This year marks the 25th Annual National Philanthropy Day, an event which provides an opportunity to publicly acknowledge and express appreciation for these outstanding individuals, corporations and fundraising professionals in the community.  This year Jeanie Peeper, who founded the International FOP Association (or IFOPA), is being honored for her many years of dedication to raising awareness and research funds for those with FOP.

Only after Jeanie graduated from college did she learn that there were other people in the world with FOP.  Contacting some of those patients gave Jeanie the incentive to start the International FOP Association in 1988. In its infancy, IFOPA was first a pen pal group and also started to do fundraising for FOP research. Jeanie's goal for herself and others was to end the isolation of living with FOP.

As of 2010, the IFOPA has 725 members represented in 57 countries worldwide, with 285 international members (outside the U.S.) with FOP and 180 members with FOP living in the U.S. Thanks to this global community, they have been able to partner with other FOP organizations around the world, including ones established in Argentina, Australia, Brazil, Canada, Germany, Italy, Japan, Peru, Scandinavia, Spain and The Netherlands.

To learn more about National Philanthropy Day or the AFP, please Click Here.
Hayden's Hope fundraiser is held on behalf of the IFOPA.  To learn more about Jeanie and the IFOPA click here.

Did you know?

Some interesting facts about FOP.  Did you know that the earliest documented cases date back to the 17th and 18th centuries?

In 1692, French physician Guy Patin met with a patient who had FOP and mentioned the encounter in his writings. In 1736, British physician John Freke described at length an adolescent whose diagnosis included swellings throughout his back.  The disease became known as

NORD Press Release

National Organization for Rare Diseases
NORD - Press Release
July 21, 2010

WASHINGTON DC-----An advocate for people with rare diseases today told a U.S. Senate committee that the burden of funding and driving research on rare diseases too often falls upon patients and their families.
“As a society, it is wrong for us to expect people with devastating diseases to fund the search for their treatments,” said Diane Dorman, vice president for public policy of the National Organization for Rare Disorders (NORD). “There are nearly 7,000 rare diseases, and only about 200 of them have treatments. Many are not being studied by any researcher in government, academia or industry.
“Through golf tournaments, raffles…"

Congressional Causus on Rare & Neglected Diseases Formed

John Crowley, whose family’s story is portrayed in the feature film Extraordinary Measures starring Harrison Ford and Brendan Fraser, announced at the NORD Gala on May 18 that he and NORD President and CEO Peter L. Saltonstall filed papers that day to pave the way for establishment of a Congressional Caucus on Rare and Neglected Diseases.
The Caucus will provide a forum within the U.S. Congress to focus on issues and legislation related to rare diseases and orphan product development. Crowley and Saltonstall have been working with legislators and legislative aides to lay the groundwork for the Caucus.
To learn more, visit the National Organization of Rare Diseases (NORD) for more information at http://www.rarediseases.org/.