awareness campaign

THE LIGHTS OF NYC

Many people always comment on the bright lights of NYC. I wanted to share my thoughts on that. In December, the Plaza is lit up with Holiday lights.
In July, there are the lights from the fireworks. On a rainy evening, you can bet the city is flooded with the headlights of the yellow taxis of NYC. But on February 28th, 2011, the Plaza at 30 Rockefeller Plaza will be lit up with the best lights of all. These lights are special. They worked hard, too hard to get where they are now. These lights had to leave loved ones behind in order to shine their brightest. And these lights would love to be on Earth again, but would have to struggle in order to be lit up. They are the lights of Heaven. If you choose to tune them out, you may not see them, but who would want to tune these beauties out? They are our strongest, brightest and bravest form of light here on Earth. Once they reach Heaven and become so brightly lit, they illuminate such power that it would be hard not to focus on them.
Now, they need help here on Earth to continue to be seen. They need our help to continue shining and burning bright. And by us helping them, they can also shine their light on those on Earth that struggle with the same things they did. Their job in Heaven is to help the sick get better and to help the well stay that way. Without their light, we could not find our way. The path to lending a helping hand to those in need has to have light!!
So, on February 28th, 2011, the lights of Heaven will shine so brightly on NYC that it will leave a lasting impression on those who did not know about them before, and will leave an even longer lasting impression on those of us who did know them before this day.
Join us on February 28th, either in person or through your TV, but join us in making NYC the brightest it will ever BE!!!!
by: Jennifer Mercereau

Our endeavors to bring awareness were successful!! We started out with a  wonderful dinner on Sunday evening with new friends and extended family members, some of whom we have never met in person, only online. I asked everyone to go around the room and introduce themselves and why they were there. This was so helpful to get to know everyone and so moving to hear everyone’s stories. Some families were finally able to see that they were not alone in this fight. The time spent with these families was priceless and so are these photos!

Well, 5 A.M. came early and off we went to Rockefeller Center for liam’s lighthouse foundation’s HISTIOCYTOSIS RARE DISEASE DAY CAMPAIGN outside The Today Show! It was so great to see our crowd, our beautiful children’s photos, and all the royal blue from the histio awareness scarves. I was so proud as I am sure my little Liam was as his spirit showered us with rain! The photos were waterproofed so thank goodness for that! We did get about 15 seconds of air time as I spoke to Matt Lauer. I definitely would have liked to have had more time to speak, but I am thankful for the opportunity to get the word Histiocytosis out there! As stated by Kelly Marsh’s husband, “It was a 30 second opportunity, but a 30 second commercial spot on the Today Show would have cost us close to a million dollars so it was truly better than nothing at all”. Well stated Bill. I got a chance to speak briefly about Histiocytosis and make the 5.3 million viewers aware of this disease. That was truly the whole point of this campaign. Matt Lauer started to walk over to me, asked me who he would be speaking with, and told me he doesn’t have a lot of time so I have to be fast! So, that’s what I did. The image of all the “faces of Histio” is one I will never forget. Mission accomplished until next time! People have already commited to attending next year's event and helping us spread awareness!
Here is the video clip from liam’s lighthouse foundation at The Today Show! This is the best clip we have right now. You may need to have your volume all the way up!

SPECIAL THANKS to Rochelle Wilkinson and Jennifer Mercereau for the AMAZING job they have done organizing this event and for their continued dedication to our cause. Also, special thanks to Rose Ann Podminick, Carla Ferrara, Joan Ralston, Gina Maldonado-Rodek, and April Zambetti for coming and helping with the dinner event and for being a volunteer in the crowd. Special thanks to John, Teresa, and Taylor Ryan for helping with the goody bags and providing the most beautiful and best tasting cake ever, and to Kelly Fantasia and Grant Thorton for allowing us to use her board room. Special thanks to all the parents who couldn’t be there but were there with us in spirit and for allowing us to include their child’s photo in the campaign. Special thanks to all the volunteers and who came out to support these families and hold a child’s photo. Special thanks to all the histio parents who came out to honor their child by holding their photo. I realize these families and volunteers stopped what they were doing, took off work, left their child/children, and traveled from all over the world on their own dime including our most distant traveler from the UK, Nikki Whitehorn (HLH angel Charlie’s mommy) to make a difference so thank you all so much! I have made new, amazing friendships and connections with all these special people and for that I am very grateful! I am super excited for next year!!

LIAM'S LEGACY

sweet boy named Liam;

A precious son.

A foundation built

of a mother's love.

A lighthouse brightly shines

in honor of his memory.

For this dear boy lost his life

to a rare, unknown disease.

The finding of a cure is yearned,

by those with love and hope.

Bringing awareness to many others

are helping families to cope.

An Awareness Event is being held,

just outside the Today Show,

Friends and families are gathering,

to make Histiocytosis known.

We are honoring heroes' lives,

who know this rare disease.

They have battled and still fight.

They are part of our family.

Together we'll make a difference,

all across the nation.

If you want to help the histio heroes

in their fight, support:

Liam's Lighthouse Foundation.

www.liamslighthousefoundation.org

by: bobbi kaufman

RARE DISEASE DAY PRESS RELEASE



NEXT YEAR'S CAMPAIGN WILL BE HELD IN NYC FROM FEBRUARY 24-25, 2012.  PLEASE CLICK ON THE LINK BELOW FOR DETAILS!
http://www.facebook.com/#!/events/252239901479695/