Help Raise Histio Awareness – FEBRUARY 24-25, 2012

 Please help raise Histio Awareness

RARE DISEASE DAY PRESS RELEASE (PDF File)

NEXT YEAR’S CAMPAIGN WILL BE HELD IN NYC FROM FEBRUARY 24-25, 2012.  PLEASE CLICK ON THE LINK BELOW FOR DETAILS!

https://www.facebook.com/#!/events/252239901479695/
 http://www.liamslighthousefoundation.org/awareness_campaign.html

Liam’s Lighthouse Foundation 3rd Annual Histiocytosis Awareness Campaign
 
Friday, February 24, 2012 at 6:00am until Saturday, February 25, 2012 at 9:00pm
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    For those of you who may be unfamiliar with our event , here is a brief description of what we do andWHY…As we all know, Histio diseases are put into the “rare” category. Meaning what? Meaning not enough doctors know about it so our children go undiag…nosed? Yes, unfortunately this happens often in the Histio world. It also means that government does not feel it affects “enough” people to warrant federal funding for research, treatment, and what we all want, a cure.When you have been told your child’s disease is “rare”, you feel alone, helpless, and most of all scared of the outcome. Knowing the government does not recognize this disease which is wreaking havoc on your child is disheartening. This is why parents do what they can to bring attention to this disease by having fundraisers, starting foundations, or doing what supporters of Liam’s Lighthouse Foundation did last year.As we forge ahead with our plans for 2012 to raise money for research, and ultimatley help fund a cure, we continue daily to spread awareness in the community and medical field, offering hope and information to those still in the dark about this awful disease.

    Last year’s event was AMAZING to say the least! People traveled from as far as the UK to help raise HISTIO AWARENESS!!! So many wonderful families came to New York to honor thier loved one and stand up and tell the world about histio!! It was VERY empowering!!!

    In the past 2 years we have traveled to New York City to “The Today Show” on or around Rare Disease Day (usually the last day in February) and we go armed with poster sized prints of all of those who have been diagnosed with histiocytosis (children & adults). These posters are held by friends, family members, and volunteers standing outside The Today Show to be seen on National Television. Each year we have been interviewed on live TV and have been able to speak about histiocytosis. We convey the message about how underfunded and unknown this disease is to most of the medical community, and we stress the importance of awareness on all levels, parent advocacy, doctors, EVERYONE. We have recieved an overwhelming response from all over including many in the medical field who have visited our website and told us they are fresh out of medical school and it was NOT covered in their curriculum.

    One of the goals this year is to expand our awareness catching activities to include not only one day at The Today Show, but two! Due to overwhelming requests, we have decided to make Liam’s Lighthouse Foundations 3rd annual Histiocytosis Awareness Event a 2 day event. We will be going to The Today Show on Friday morning 2/24/2012 , and Saturday morning 2/25/2012. This will alllow us to deliver a message to the millions of people who faithfully watch The Today Show, and also allow those who dont watch TV M-F due to work obligations to see all of the faces of histio. THIS IS NOT MEANT FOR PEOPLE TO CHOOSE ONE DAY OR THE OTHER TO BE PRESENT. WE NEED EVERYONE THERE BOTH DAYS TO MAKE AS GREAT OF AN IMPACT AS WE DID LAST YEAR! The plan again for this year is to fill the crowd outside with as many “Faces of Histio” as possible. Imagine the response when the world sees all the faces of those affected by this disease. Remember, there is power in numbers, and in numbers we can make a difference.

    #1 THE ITINERARY

    This year we have so much more planned for spreading awareness and making great use of our time in New York.
    Check this link for the ITINERARY!
    http://www.facebook.com/note.php?note_id=10150656492632664

    #2 THE DINNER…

    Location: Marriott Marquis on Feb 24th(friday) time: 7-9pm
    We invite everyone to join us for dinner where families, friends and histio community supporters get to meet each other and connect. This is a great oppurtunity for those who have felt so “alone” in thier journey, to meet with and connect with others in the same situation. Dinner will be Friday night. Please go to this link and let us know how many in your party will be attending. Also, the information about the dinner is on this page so visit this link:
    http://www.facebook.com/notes/rochelle-griger-wilkinson/rsvp-for-dinner-at-the-marriott-marquis-feb-24th-7pm-9pm-for-liams-lightouse-fou/334861296535079

    #3 HISTO AWARENESS ITEMS AVAILABLE FOR PURCHASE…

    http://www.facebook.com/media/set/?set=a.10150618181035977.440185.354056465976&type=1

    #4 THE LANTERNS…

    We will be letting off lanterns for our Histio warriors and angels! If you would like to light one off or have one let off for your warrior or angel, we just ask you make a $6.00 donation on our page: http://www.liamslighthousefoundation.org/Contact.html. Please let us know in the “comments” area whom it is for.

    #5 THE HOTELS…

    For your convenience, we have contacted a few hotels and had the opportunity to block some rooms at each with a discounted rate. However, please feel free to stay wherever you like.
    Below is a list of hotels in and around Rockefeller Center where we will be conducting our awareness campaign. We choose a diverse group of hotels for you to choose from based on customer rating, price, and location. We have been able to secure group rates at several of these hotels for our group. Each individual calling in to book a room will need to pay for said room individually, but should mention you are with Liam’s Lighthouse Foundation to be offered the group rate.

    We also included a couple hotels that do not offer group rates but were choosen due to their location and or price.
    Please take a moment to review these hotels online to decide if you would like to stay at any of these.

    MARRIOTT MARQUIS

    1535 Broadway, New York New York 10036
    1-800-228-9290 or 212-398-1900
    We have 20 rooms held here
    ( we will have a call in number after 1/5/2012)
    Rates will not be in effect until after this date We have standard rooms in double, triple, or quad occupancy all for a low rate of $229.00 per night

    Please have the guests in your group directly call Marriott reservations at 1 (800) 228-9290 or (212) 398-1900 on or before Friday, February 3, 2012, (the “Cut Off Date”) to make their sleeping room reservations. Please advise guests to identify themselves as part of Liam’s Lighthouse Foundation group staying at the New York Marriott Marquis, located at 1535 Broadway, New York, NY 10036-4077

    All reservations must be accompanied by a first night room deposit or guaranteed with a major credit card. The Hotel will not hold any reservations unless secured by one of the above methods.
    Reservations for all guests must be received ON OR BEFORE FEB. 3RD! (the Cutoff Date). After the Cutoff Date, the hotel will release any unreserved rooms for general sale and, in the hotel’s discretion, will accept reservations at Liam’s Lighthouse Foundation’s group rate, on a space and rate available basis.

    The New York Marriott Marquis brings the energy of Manhattan to your door. Located in the heart of Times Square and the Broadway theater district, this hotel in Manhattan, New York is perfect for weekend getaways, as well as family and business travel. Boasting updated rooms and suites, high-speed elevators and three restaurants and lounges, this New York hotel in Times Square puts you near attractions like Fifth Avenue shopping, Radio City Music Hall, Rockefeller Center, NBC Studios and Central Park. We’re also close to attractions like Carnegie Hall, Lincoln Center, the UN and Madison Square Garden – so a stay at this Midtown Manhattan hotel in Times Square ensures that entertainment is just around the corner. Enjoy awesome views of New York City at this Times Square restaurant while enjoying dinner or a drink. The only revolving roof top restaurant in the city, we feature NY state cuisine
    Our new restaurant features New American cuisine and serves breakfast, lunch and dinner. The décor features a dazzling 21-foot high spiral centerpiece with 11 TVs and a 20-seat bar. Menus feature various selections for sharing as well as full entrees.

    visit www.marriott.com/newyork

    HILTON TIMES SQUARE

    234 West 42nd Street
    New York, NY 10036
    (P) 212-642-2600 (F) 212-642-2514
    24 rooms blocked: $189-$210
    Guests can call 1.800.HILTONS and ask for the Liam’s Lighthouse Room Block at the Hilton Times Square Hotel.
    RESERVATIONS: Reservations will be made by: Rooming List NO LATER THAN JAN 26TH! After that date, you agree that we may offer unused rooms held in your block to other customers. Reservations requested by your attendees after this date will be accepted based upon room and rate availability. Room and tax will be paid by individuals. Guest pays own incidentals.

    INDIVIDUAL CANCELLATION: Cancellation of any individual reservation must be received three (3) business days prior to arrival or one night room and tax charges will prevail

    HILTON GARDEN INN TIMES SQUARE( we have 15 rooms held here)

    790 Eight Ave New York New York 10019
    212-581-7000
    **** 2 Queen Beds $159.00 ( flat rate based on 2-4 occupants)
    ■Spacious, newly appointed guestrooms with 32-inch LCD flat panel televisions, refrigerator, microwave, safe, coffee maker, and large work desks with adjustable lighting and ergonomic chairs.
    ■Complimentary high-speed wired and wireless Internet access is available in each guestroom, featuring secure remote printing directly to our hotel’s business center.
    ■Complimentary 24-hour Fitness Center, complimentary 24-hour Business Center, and complimentary wireless Internet access in the lobby.
    ■Complimentary morning coffee, tea, and USA Today®. Pigalle Brasserie, a 1950′s Paris style café, offers breakfast, lunch, dinner and evening room service. Pavilion Pantry® convenience mart is stocked with snacks, drinks and more.
    Nearby Big Apple Attractions & Other Things to Do In New York City:
    ■In the heart of Times Square, steps from Broadway theaters, Central Park, Carnegie Hall, Radio City Music Hall & Rockefeller Center. Our Hilton Garden Inn Times Square hotel is the closest Hilton Garden Inn to Times Square & Broadway theaters.

    THE JEWEL( we have 20 rooms held here)

    11 West 51st Street
    New York, New York 10019
    203-905-2068 these prices will expire on February 1st 2012
    Our group code is JNY223
    Standard room @ $229.00 for the first night, $199 each additional night
    This hotel was chosen for location and price. It is suitable for 2 adults as the rooms are small.
    The Jewel Facing Rockefeller Center is a full service hotel with 135 rooms located opposite Rockefeller Center, steps away from the famous skating rink, Christmas tree, St. Patrick’s Cathedral, Saks Fifth Avenue, Museum of Modern Art and Radio City Music Hall. Minutes from world class shopping, restaurants and entertainment. The Jewel Facing Rockefeller Center is the best value hotel based on quality and the prime location. The Jewel Facing Rockefeller Center provides:• Safe, restricted entry• Instant registration and check out• Free high speed internet access throughout the hotel• Nearby restaurant • Multi-menu in room dining options (through onsite restaurant and many local restaurants)• Refrigerator and microwave available• Unlimited complimentary chilled purified bottled water • 3 meeting and event rooms available nearby (maximum reception style 55 people)• Free use of computer/printer • Ergonomic workstations• State of the art guest rooms with premium bedding• Contemporary furnishings• Flat panel HD TVs• Complimentary coffee and tea• 24 hour guest service desk • Fitness room •

    visit www.thejewelny.com

    #6 THE PHOTO POSTERS…

    FOR NOW, WHAT I AM ASKING IS FOR EVERYONE TO SEND ME THEIR PICTURES ASAP if you would like yourself/or your loved one affected by histio to be honored in New York. This is a VERY long process and we went to New York last year with almost 100 posters , and almost 150 volunteers. This year we predict we will have 400 posters and over 500 family members & volunteers. I WILL TAKE SUBMISSIONS TODAY UNTIL JAN 31ST! Please do NOT wait until the last minute to submit your picture, the printer doing the posters is offering them to us for COST and does them when he can so please let’s not send him 300 posters all at once before our event.

    If you wish to submit your pictures, please send me 3 different pictures ( only 1 will be made into a poster) we will choose the one that enlarges best.

    PLEASE POST YOUR 3 PICS ON THE WALL OF THIS EVENT with histio warrior/angels name. I will print them out and take them to the printer from there, so PLEASE remember to tag me, Rochelle Griger Wilkinson, in the picture so I can save & print.

    The cost of the poster is $ 40.00

    Checks can be mailed to :

    Rochelle Wilkinson
    1 Dunscombe Court
    Phoenix, Md 21131

    Once we make the poster, we will use the same poster every year you WILL NOT need to pay to have one made again. They are water proof and hold up very well.

    #7 THE RELEASE FORM…

    We will email you a RELEASE FORM for you to sign once submission is complete. Once this is done you will be covered for all of our future events.

    #8 SPONSORSHIPS AVAILABLE TO BE SEEN ON NATIONAL TV…

    Exciting sponsorship opportunities available for your business name to be seen on national TV as follows: $300 for a spot on banner along with other businesses, or $600 for a banner of your own. Go to http://liamslighthousefoundation.org/Contact.html to make your donation today!

    If you would like to be present on this day and help us bring awareness in person, we would love to have you! If you cannot be present but would like your child’s picture featured that day on national television as we did last year and we will arrange for a volunteer to “adopt” your poster for the day.
    Please visit http://liamslighthousefoundation.org/awareness_campaign.html to see what we accomplished in the last 2 years to help increase HISTIO AWARENESS!!

    #9 YOU MUST REGISTER…

    Those attending our awareness campaign ARE REQUIRED TO REGISTER online at http://liamslighthousefoundation.org/awareness_campaign.html in order to get a wristband needed for participation in all activities.
    Please state in the COMMENTS area which dates you will be present and where you are staying. Please fill out ALL information especially phone and email in case we need to get in touch with you.

    #10 IPAD 2 RAFFLES…

    WHO WOULD LIKE TO WIN A NEW IPAD 2 AND HELP SUPPORT HISTIO RESEARCH? We are having a raffle for a new IPAD 2 to raise money for Histio research. GO TO :http://liamslighthousefoundation.org/awareness_campaign.html $20.00 and in the comment box enter your name, + the name of the person who sold you the ticket, plus your cell phone number so we can call you when you win! The drawing will be done in NYC at our awarness event in the middle of Times Square on Feb 25th… PS. we are having 4 raffles we will have 250 tickets in each bowl and will be giving away 4 IPADS so your chances are 1 in 250 our goal is to sell 1,000 tickets please help us get there!

    We are super excited for this year’s event and look forward to seeing everyone!!

    Together, we will make a difference in the world of Histiocytosis!

    LOOKING FORWARD TO SEEING EVERYONE AGAIN THIS YEAR AND WELCOMING NEW FAMILIES TO OUR CAUSE!

    Sincerely,
    Michelle, Rochelle, and Jennifer See More

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One Response to Help Raise Histio Awareness – FEBRUARY 24-25, 2012

  1. Nana says:

    Kristina updated her FB status: “Thank you to everyone that went to New York to help raise awareness for Histio. It means so much to me! I hope next year I can join you all. I was wonder if anyone knows who was holding Liam’s picture?”