Founder, Michelle Schulze, was recently interviewed by her alma mater, Misericordia University for the Misericordia Alum winter edition of Misericordia Today. The article talks about Liam's Story and the many achievements Liam's Lighthouse Foundation has had - from awareness events to giving grants - because of each and every one of our Histio family members, friends and generous donations by others. TOGETHER we are STRONG!
Our very own baby angel Liam even made the front cover!
Check out the article HERE and and join us in congratulating Michelle in just how far Liam's Lighthouse Foundation has come in just these few short years!
-The LLF Team
Thank you Misericordia University and fellow Misericordia Alum for allowing me to share Liam's journey. Please take a moment to read the article my college wrote up about Liam's Lighthouse Foundation in their quarterly magazine, Misericordia Today!
We are pleased to announce the release of our new website, designed with a fresh new look and user-friendly navigation, updated with the latest information about our research initiatives and fundraising efforts!
As we move forward towards our goals, we are beyond thrilled and so proud of our one of a kind awareness event that has been organized in NYC, our fundraising efforts, and the research we are funding! What started out 5 years ago as 3 friends trying to support a grieving mother who lost her 20 month old son to HLH, has grown larger and faster than any of us could have imagined. So please make sure you REGISTER your email with us to stay up to date on the latest news, research, and fundraisers!
I would like to welcome our newest board member, Amanda Majusiak, web developer and social media outreach coordinator. Amanda is the wife of adult HLH survivor, Eric Majusiak, and has made our new website possible. We are thrilled to have this very talented, passionate, and dedicated new board member and we are so excited to have her as part of the team!
Thank you to our fellow histio families, friends, and supporters for your continued support. Most of all, thank you to LLF's dedicated board members who continue Liam's fight as much as they are able and have never left my side. I am truly blessed to have you all in my life. Liam's light continues to shine because of each and every one of you and in return, other lives are being saved!
Here is to innovation, implementation & creating memories that will last a lifetime with Liam's Lighthouse Foundation!
With much gratitude,
We are excited to announce this years 5K to Fight Histio. I am so thankful for how far this has all come and how many people help keep Liam's spirit alive. I hope you will consider joining Team Liam and all the other families in NYC this summer! Save the Date 07.20.14 !
You can find out more by visiting our Fundraising site HERE
It is with such plesaure that we announce Liam's Lighthouse Foundation's Histio Awareness Campaign and 5K TO FIGHT HISTIO 2013 was a HUGE success! We were blessed to have so many histio families and friends with us in NYC this year including a number of warriors and survivors! The bonds and memories that were made are priceless and this is just the beginning! We were also blessed to have two very special guest speakers at our Meet and Greet including Dr. Lisa Filipovich, HLH expert, researcher, and treating physician, and Mr. John Henkels, father to an HLH angel and author of Samuel's Mission. Thank you both for taking time out of your busy schedules to join us this year! I would also like to say thank you to Cincinnati Children's Hospital Medical Center for sponsoring our Meet and Greet that evening!
We are so thrilled to report the 5K TO FIGHT HISTIO had 216 participants and raised just under $82,000.00 for it's first year with some donations still funneling in! THANK YOU SO MUCH to our many donors and sponsors, all who worked so hard trying to fundraise to reach your goals, and those volunteers who worked so tirelessly to help make sure our event was a success! HUGE THANKS to Ralph Nardell Photography for donating his time and talent to cover our event and to the following dedicated volunteers as well: Lynn Carle, Amanda Majusiak, Lori Negron, Jodie Stewart, and Bill Wilkinson. But most of all, this event would not have been possible without three very special people that wanted to make a difference for a very special little boy they had never met. The love and dedication these three women continue to give to this cause is nothing short of amazing and complete selflessness. Although not one of them has been directly affected by histio, they have been forever changed by a little angel, Liam Christopher, and they take time away from their own lives and families to help all of us, especially myself. Rochelle Wilkinson, April Zambetti, and Jennifer Mercereau, there are not enough 'thank yous' in the world!
It is important to note that although we did not receive the live coverage we would have liked this year due to the birth of the royal baby, we made HUGE strides of increasing awareness and hopefully much more to follow in the near future. Most of our attendees had already left The Today Show when the good stuff started happening. We spoke directly with two of the producers at The Today Show for a lengthy period of time and provided them with the necessary information. One of the head producers explained that if it were any other day, things would have been very different in the amount of coverage we would have received. She asked us to come back another day but we explained to her these families come from all over the world to be here and represent their loved ones and we aren't able to come back another day. She assured me she would follow up with me for a possible interview and we exchanged contact information. The other producer took out his phone and started to record our conversation and interview us outside The Today show stating he was going to show it to his producers and hopefully that would lead us to an interview. I feel we made true progress this year by getting to speak with the right people which had not been accomplished in the previous years. We also connected directly with Robin Roberts of GMA, giving her our information and educating her about histio. We will not give up regardless of the turnout. THIS IS OUR AWARENESS EVENT and we WILL be back next year!
In summary, we had a very SUCCESSFUL event! We raised tons of awareness, tons of money for research, and made significant connections with the right people! It's going to be hard to top this next year, but I have no doubt in my mind that WE CAN and WILL do it TOGETHER!
THANK YOU SO MUCH TO THOSE WHO MADE THE TRIP AND CAME OUT TO STAND, WALK, RUN, AND RAISE AWARENESS WITH US IN NYC! WE COULD NOT HAVE DONE IT WITHOUT ALL OF YOU!
Liam's Lighthouse Foundation
Liam’s Lighthouse Foundation is ecstatic to announce the funding of its first research grant to Cincinnati Children’s Hospital Medical Center in the amount of $100,000 over the next two to three years for the research of gene therapies for Hemophagocytic Lymphohistiocytosis (HLH).
LLF traveled to CCHMC to present this grant and meet with the researchers on 8/2/12!
Here is an article from a newspaper:
Thanks to the Ryan Family, all the bowlers, supporters and organizers who helped make this year's Bowl 4 Histio event a great success! $9036 was raised for Liam's Lighthouse Foundation and histiocytosis research! Way to go Team Taylor!
Also, thank you so much to Rochelle Griger Wilkinson and Amy Griger for traveling and helping out with this event. Together, we will make a difference in the world of Histiocytic Disorders!Dr.Lisa Filipovich Participates in Grand Rounds and Lecture at The Children's Hospital, Aurora, CO
Charity event honors East Islip girl with rare disease
The 3rd annual Liam Schulze memorial golf tournament was held at Sand Springs Country Club in Drums, PA on June 5, 2011. Once again it was a huge success, raising close to $9500.00 toward the research of Histiocytosis! Thank you to all who participated and helped to make this event possible including our sponsors, golfers, and volunteer staff, especially Chris Slezak for organizing the event! A pre-golf tournament "Happy Hour" was held the night before by Barbara and Sal Sciandra to help raise money for the foundation. Thank you Barb and Sal for organizaing this event!
"Bowling 4 Histio" in honor of LCH warrior, Taylor Ryan, took place on July 2, 2011 in East Islip, NY. This fundraiser was held by the Ryan family and raised close to $11,000.00 for LLF! Thank you, Ryan Family, from the bottom of our hearts!
"Pinning Down a Cure" bowling fundraiser and silent auction in honor and memory of HLH angel, Abigail Buckner, took place Saturday, August 6, 2011 in Shakopee, MN. LLF is extremely excited and thankful to have been the beneficiary of this event! Thank you Buckner Family!!
Thank you to LLF supporter, Becky Honeycutt, for competing in a "5K for Liam" on April 3, 2011 and raising money for LLF!
On April 1, 2011, liam's lighthouse foundation in conjunction with The Children's Hospital, Aurora, CO and The University of Colorado Medical School, sponsored Dr. Lisa Filipovich, expert in the field of HLH, to visit and provide grand rounds and lecture to pediatric fellows, residents, and attending physicians. Some histio parents and grandparents were also able to join us for a very informative day. LLF is very much focused on awareness and we were delighted about the success of the event. Thank you to Dr. Jenny Soep for helping to make this opportunity possible.
Find out what's new at LLF by following our News Blog!