Rare Disease Day - February 28, 2011

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Lucky winner for the trip for 2 to the One & Only Palmilla is...

Laurie Flores of Los Angeles is the lucky winner of our drawing for a trip for 2 to the One & Only Palmilla in Los Cabos Mexico. Congratulations Laurie!!!

Event Photos to be Posted Soon!

Want to know who won what?

Want to know who won what?  Check out the list below.

Thank You So Much

November 18, 2010


Dear Friends of Hayden’s Hope,

What an amazing evening last Saturday was. John and I enjoyed seeing so many of you there mingling with friends and catching up with ones you haven’t seen in a while. We had record attendance this year with close to 250 people attending. I am so excited to announce that the event raised just over $100,000!! That is absolutely fabulous. Your generosity will help to fund the ongoing research at the FOP Research Lab that Dr. Fred Kaplan told us about on Saturday evening.

The FOP Lab’s research budget of $1.5 million annually supports a core laboratory of 15 scientists as well as collaborators around the world. The FOP lab is funded 75% by family held fundraisers such as Hayden’s Hope. Each year, we struggle to find the funds to persist. But we need to do more than persist. We need to prevail and we will with your generous help, we will.

Better treatments for FOP are not just a dream – they are now a likelihood, and a cure is a distinct possibility. A cure to FOP, this unrelenting disease, will also mean a help for many other bone related disorders such as arthritis, osteoporosis, some heart valve disorders, certain spinal cord injuries, paralysis and more. The entire research team sees its work as a mission not just a profession.

Hope is a theme in the Pheif household. Every day we are hopeful for Hayden’s health, for the health of the FOP community and that the FOP laboratory receives enough funding to continue on their awesome journey to create a cure for this mysterious and unrelenting disease. Thank you so much for joining us in our quest.

Sincerely,

$100K Raised for FOP Research!

Last night's event was a fabulous success.  Over 200 in attendance for the Hayden's Hope Benefit at the Bay Model in Sausalito.  We raised close to $100,000 for FOP research which will fund two post doctoral fellow researchers at the FOP Lab for a year.   Thank you so much for your generous and ongoing support.

TICKETS FOR TONIGHT'S EVENT CAN BE PURCHASED AT THE DOOR

We are looking forward to seeing everyone tonight.  Please know that you can buy tickets at the door.

Hayden's Hope Benefit for FOP Research
"Picture A Cure"
6pm
Bay Model Visitor Center
2100 Bridgeway, Sausalito

Live Auction Lot #4 - Roy Gover Art - Oil on Paper

Our first art piece of the live auction is an amazing piece that is generously donated by Mill Valley's own Regina O'Connell at the Barefoot Art Gallery and the Estate of Roy Gover.

This Roy Gover original art work is an oil on paper. Circa 1960. This painting is one of approximately two hundred paintings done in this medium by the artist in the early 1960's. This body of work was most recently opened and shown for the first time to the public. The artist is more widely known for his watercolors and collage that often reflect the Miro, Paul Klee style. His work has been shown in SFMOMA - 1971 and The Palace of the Legion of Honor -1966. There are three other paintings among this particular body of work that could be shown along side this untitled piece, as a series. Also found within this huge collection of oil on paper, were landscapes of West Marin, portraits and figuratives. Collectors of his work are thrilled to see this medium, which had not previously been strongly identified with Roy Gover. As is with all his works, it is executed beautifully.
To see all of Roy's work, stop by the Barefoot Art Gallery at 20 Sunnyside Avenue in Mill Valley or visit http://www.barefootartgallery.com/
To view a trailer of a new documentary on his life, visit - http://www.rhagthemovie.com/.

Mid Century Modern - Live Auction Lot #3

Dear Friends of Hayden's Hope,

Our third Live Auction item is a treat for anyone who loves mid century modern design. We are very thankful to Knoll for their generous donation of a Bertoia Asymmetric Chaise Lounge Chair.

This masterpiece of mid-century experimental design is one of the largest that Harry Bertoia produced. Bertoia designed it in the early 50's but only made one prototype. Knoll started producing this piece in 2005, only after the prototype, which had been lost for 50 years, was found at Auction in Chicago in 2003. It sold to a private collector for over $100,000.

With his iconic seating collection, Harry Bertoia transformed industrial wire rods into a new furniture form. The events that made this work possible began a decade earlier at Cranbrook Academy of Art when Bertoia met Florence Knoll Bassett (then Florence Schust). Years later, the Italian-born designer was invited to work for Florence and her husband Hans Knoll. The terms were favorable to the artist and Bertoia was given the freedom to work on whatever suited him, without being held to a strict design agenda. The result of this arrangement was the Bertoia Seating Collection (1952).
Click here to see more of Harry Bertoia's designs.

To view all auction items, click here.

Tickets for Hayden's Hope event on November 13th can be purchased on line at http://www.haydenshope.com/.

We look forward to seeing you at the event.

Sincerely,
John and Megan Pheif

Wanna Get Away? - Live Auction Lot #2

Dear Friends of Hayden’s Hope,

John and I are very excited to bring our next fabulous auction item.

The winners of this amazing live auction item will enjoy a memorable and fabulous one week vacation at a Villa in the private development of Punta Mita, Mexico. Punta Mita is the crown jewel of Mexico's Riviera Nayarit, just 28 miles north of Puerto Vallarta.

The Villa is nestled in between the Four Seasons and the St. Regis resorts.  It boasts 5 bedrooms and contemporary/comfortable furnishings. The fifth bedroom is a bunk room with a bunk bed and double bed trundle, easily accommodating 4 kids. The house sleeps 12 in beds. With a centralized master entertainment system the house offers sound through out and outside on the patio and pool area (Bring your IPod). Wi-Fi access.

The villa also offers a full service concierge capable of arranging, private chefs, pre-arrival food and beverage shopping, airport transportation, tours, surfing, fishing, messages, dinner reservations, daily cleaning, servers, etc.

The development boasts 2 private Jack Nicklaus golf courses, 2 private beach clubs, and 2 private tennis clubs.

The golf course has a full driving range, practice facilities, and a club house with bar and restaurant. The beach clubs offer beach front pools, cabanas, food and beverage service to your lounge chair, dining, spa services, beach front lawns, kid’s camps/activities, playground, kayaks, etc. The beaches are swimmer/kid friendly with an abundance of marine and bird life. The coastline here is beautiful and pristine, truly one of the greatest coastal locations in Mexico.

The town of Punta Mita is just outside the gates, easily accessible by golf cart. The quiet town offers local dining (all beachfront) and shopping with few tourists/vendors.

Click here to see photos of this beautiful property.

To view all auction items or to purchase drawing & event tickets, please visit the Hayden’s Hope event website by clicking here or going to http://www.haydenshope.com/.

Sincerely,

The Pheif Family

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/.

Hayden Turns 10 Years Old

Its hard to believe that a little over 10 years ago Hayden was born.  A few weeks ago we celebrated his 10th birthday.  As I look back to May of 2000, it is hard to believe the road we have traveled. Who would have known then, that our lives would be forever changed by this sweet 7 lb 11oz little boy.  I think we all have ideas in our minds of what our lives will be like once we have children.  Among other things, John and I dreamed about cheering Hayden on at his baseball & soccer games and skiing together as a family.  Even though our lives were sent down a drastically different path because of Hayden's FOP, we are still able to do the things we dreamed about, only a little differently.  At 10, even though his FOP limits him, he is a very happy little boy.  He is surrounded by wonderful friends who are always there for him and include him in every way that they can. So at the end of the day, even though Hayden has FOP, what matters most is that he is happy....and he is very happy.  Happy Birthday to Hayden.  My birthday wish for you is that you are always blessed with such wonderful friends and that you are always happy.

Welcome

Welcome to Hayden's Hope!