liam's lighthouse foundation

liam's lighthouse foundation is a non-profit organization
with a tax exempt status under section 501(c)(3) of the
Internal Revenue Code and currently registered in the states of
Colorado, New York, and Pennsylvania.

Our EIN # is 27-1309152.

Letter of determination page 1
Letter of determination page 2
Certification letter
2011 Annual Report

All donations are tax deductible and can be sent directly to:

liam's lighthouse foundation
5818 Charlois Ct.
Colorado Springs, CO 80922

You can also donate through Paypal. Please leave a message if
you are donating in honor or memory of someone special!

*All work of the organization to date has been performed 100% by valued volunteers. There are no paid employees of the organization.

MEDICAL INFORMATION AND RESEARCH ADVISORY BOARD MEMBERS: This Board's role is primarily to contribute expertise to LLF regarding the research of HLH, LCH and other histiocytic disorders, current literature and publications, and any information that is needed by LLF regarding HLH and other histiocytic disorders. The Research Advisory Board is not a governing board. It provides guidance and insight directly to LLF to ensure that the research of HLH, LCH, and other histiocytic disorders is part of LLF's scientific framework.
This advisory board is made up of expert physicians in the area of Histiocytosis. This board's primary function is also to consult with LLF in order to provide the correct and most up-to-date information regarding the disease and it's treatments.


Alexandra (Lisa) H. Filipovich, MD

Director,Immune Deficiency and Histiocytosis Program
Cincinnati Children's Hospital Medical Center, Ralph J. Stolle Chair, Clinical Immunology, Medical Director Diagnostic Immunology Laboratory, Professor, UC Department of Pediatrics

Lisa Filipovich, MD, began her career at the University of Minnesota where she received her medical degree in 1974 and completed fellowships in both immunopathology and pediatric immunology. She became a professor of pediatrics and served for ten years as the head of the Division of Immunology at the University of Minnesota Medical School. Dr. Filipovich came to Cincinnati Children’s Hospital Medical Center in 1996. She is currently the Ralph J. Stolle Chair in Clinical Immunology and the director of the Immune Deficiency and Histiocytosis program. She also serves as the medical director of the Diagnostic Immunology Laboratory at Cincinnati Children’s.

Dr. Filipovich has a special interest in histiocytic disorders, especially Hemophagocytic Lymphohistiocytosis (HLH). Other interests include bone marrow transplant for primary immune deficiencies and post-BMT immune reconstitution. She serves as president of the Histiocyte Society, an international group of more than 200 physicians and scientists who are committed to improving the lives of patients with histiocytosis through research.

   Michael B. Jordan, MD

Associate Professor, UC Department of Pediatrics
    Clinical Interests include Histiocytic disorders: HLH and LCH

Research Interests: Better understanding histiocytic disorders and developing novel therapies for them; regulation of the immune response; immunotherapy of cancer

Education and Training:    MD: UT Southwestern, Dallas, TX 1993.
                                            Residency: Children's Hospital of Dallas, 1996.
                                            Fellowship: The Children's Hospital (Denver) 2002.
                                           Certification: American Board of Pediatrics, 1996;
                                                            Sub-board of Pediatric Heme/Onc 2002.

Kimberly A. Risma, MD, PhD

Director, Allergy and Immunology Fellowship Program
Assistant Professor, UC Department of Pediatrics

Clinical Interests: Immune deficiency; immune dysregulation

Research Interests

Pathophysiology of perforin missense mutations identified in individuals with hemophagocytic lymphohistiocytosis; molecular mechanisms of primary immune deficiency and dysregulation; natural killer cell and cytotoxic T lymphocyte cytotoxicity

Biography

Kimberly Risma, MD, PhD, is an assistant professor in the Division of Allergy and Immunology at Cincinnati Children’s and the University of Cincinnati College of Medicine.

Dr. Risma graduated magna cum laude with a Bachelor of Arts in Chemistry from Duke University in 1990 and was elected into The Phi Beta Kappa Society. She then matriculated at Case Western Reserve University (CWRU) School of Medicine in the Medical Scientist Training Program (MSTP). In 1996, she completed a PhD in pharmacology. She was selected by the leadership of the CWRU MSTP as the recipient of the 1997 Martin Wahl Memorial Fund Award, given annually to recognize the graduating MD, PhD student who has demonstrated the highest level of independence in research and excellence in research and clinical skills. She was also elected to Alpha Omega Alpha Society in 1997.

In 1997, she enrolled in a Pediatrics residency at Cincinnati Children’s Hospital Medical Center/University of Cincinnati. During the residency program, Dr. Risma was awarded the pediatric resident teaching award by the medical students. She also engaged in translational research studies related to the genetics of asthma under the mentorship of Dr. Gurjit Hershey, resulting in a first author publication as a pediatric resident.

In 2000, Dr. Risma was accepted to the Allergy and Immunology Fellowship Program at Cincinnati Children’s. In addition to her clinical training, she pursued an innovative research project under the mentorship of Dr. Janos Sumegi and Dr. Alexandra Filipovich. She proposed a mechanism to study the structural and functional impact of perforin missense mutations identified in patients with hemophagocytic lymphohistiocytosis. In 2004 she was awarded the Nezelof Prize for best scientific presentation at the international meeting of the Histiocyte Society. The culmination of her fellowship research project was published in the Journal of Clinical Investigation, 2006.

Upon completion of her fellowship in 2005, Dr. Risma was appointed as an Assistant Professor in the Division of Allergy and Immunology at Cincinnati Children’s Hospital Medical Center. In 2006 Dr. Risma received a Clinical Scientist Development Award from the Doris Duke Charitable Foundation. Dr. Risma is the director of the Allergy and Immunology Fellowship Program at Cincinnati Children's, having served in this leadership position since August of 2012.

Dr. Risma's research program focuses on understanding the molecular mechanisms of immunodeficiency and immune dysregulation in children, especially as it relates to disorders of lymphocyte cytotoxicity. In addition to her research, she sees patients from all around the country in consultation for primary immune deficiency, immune dysregulation, and allergic disorders.

Education and Training
MD: Case Western Reserve University School of Medicine, Cleveland, OH, 1997.
PhD: Case Western Reserve University School of Medicine, Cleveland, OH, 1996.
Residency: Pediatrics, Cincinnati Children's Hospital Medical Center, 1997-2000.
Fellowship: Allergy / Immunology, Cincinnati Children's Hospital Medical Center.
Certification: Pediatrics, 2007; Allergy and Immunology, 2005.

Kenneth McClain, M.D., Ph.D.

Department of Pediatrics
Section of Hematology-Oncology
Baylor College of Medicine

Director, Histiocytosis Program
Texas Children's Cancer & Hematology Centers

Dr. Ken McClain is a member of the leukemia and lymphoma teams of the Texas Children’s Cancer Center. His research is focused on the clinical and biologic aspects of Langerhans cell histiocytosis (LCH). He is a key member of the clinical trials group of the Histiocyte Society.

Dr. McClain and Dr. Carl Allen see 100 new patients with a variety of histiocytic diseases each year. A number of clinical studies are in progress or development including new therapeutic interventions for CNS LCH. Current biologic studies in his lab are focused on determining the gene expression profiles Langerhans cells and lymphocytes from control and patient tissues and making clinical correlations. Learn about Dr. McClain's Histiocytosis Research

Education
M.D. and Ph.D., University of Chicago School of Medicine
Residency, The Johns Hopkins Hospital
Postdoctoral Research, National Institute of Child Health, Laboratory of Molecular Genetics
Fellowship, University of Minnesota School of Medicine

Board Certifications
American Board of Pediatrics: Pediatrics and Pediatric Hematology/Oncology

Selected Memberships
Past-President, Histiocyte Society
Member, American Society of Hematology
Member, American Society of Pediatric Hemaotlogy/Oncology
Past-President, Gulf Coast Hematolgy Society
Board Member, Histiocytosis Association of America

Clinical Special Interests
Hematologic Disorders
Leukemia
Lymphoma
Histiocytosis
Sickle Cell Disease

Research Interests
Clinical and biologic aspects of Langerhans cell histiocytosis (LCH)
Gene expression profiles

BOARD MEMBERS:

Michelle Schulze - Founder, President
Colorado Springs, CO
liamslighthouse@comcast.net

Michelle is originally from Pittston Township, PA and graduated from Misericordia University in 2001 with a Bachelor of Science, Masters in Physical Therapy. She is currently employed as a physical therapist in Colorado Springs, CO. Michelle and her husband, Chris, were blessed with a beautiful baby boy on January 2, 2008. After 10 months of misdiagnosis, their son, Liam was finally diagnosed with HLH on March 26, 2009. (see Liam's story). After Liam's passing in September 2009, Michelle continued to come across other parents with children affected by HLH who also were initially misdiagnosed of this deadly disease, some resulting in their child's death as well. Michelle also continued to research HLH and soon found that it has been diagnosed since the 1950's. She felt it unacceptable physicians are still misdiagnosing the clinical signs and symptoms of HLH even though there has been more and more focus on it since then as well as the formation of The Histiocytie Society in 1985. Michelle founded LLF in order to continue the fight her son no longer could against HLH. Statistics are showing the incidence of HLH has increased over the past few years due to progress in research and better detection. Michelle is dedicated to raising awareness of Histiocytic disorders, supporting families affected by these diseases, and funding much needed research for safer more effective treatments and ultimately a cure. She will do this in her son's name and honor of his fight against HLH. "There are days when my mind wanders back to those sleepless days of pure FEAR living in the hospital and they will be engraved in my mind forever. Life continues to challenge me each and every day, but starting his foundation is one of the best things I have ever done. Liam has taught me so much. He has taught me to fight for what I believe in, not to give up even when things seem impossible, and what love truly feels like. The love for a child cannot be compared to any other. He has taught me that life is not measured by the number of breaths we take, but by the moments that take our breath away. I am just a mom who lost her child to a horrible disease and is trying to make a difference in the world of Histiocytosis. There is power in numbers and in numbers we can make a difference."

Rose Ann Podminick - Treasurer
Colorado Springs, CO
pmapleleaf@comcast.net

Rose Ann lives in Colorado Springs, CO with her husband, Frank. She is the proud mother of Chris Slezak and Michelle Schulze(Liam's mommy). She is also the very proud grandmother to Juliana and Liam. She graduated from Wilkes University in 1972 with a BA in Psychology and Elementary Education. She was an educator for 35 years in Pittston, PA. Upon retirement in June, 2007, she moved from Shavertown, PA to Colorado Springs, CO to be near her daughter, Michelle, and to take care of and enjoy her future grandson, Liam. When Liam became ill, she traveled to Cincinnati with her daughter to help with his care. She remained there for 6 months until he could fight no longer. "I left part of my heart and soul in Cincinnati when Liam passed and will passionately fight for the rest of my life to increase awareness of this horrific disease."

Rochelle Wilkinson - Activities Coordinator, Fundraising
Phoenix, MD
dirtdetective@comcast.net

Rochelle is married and the mother of 4 boys from ages 5 to 20. She owns and operates her own cleaning business for the past 20 years. Rochelle came across Liam's story when a friend of hers asked her to attend a bone marrow drive in honor of a baby girl affected by a "rare" disease, HLH. When she missed this drive, she went to DKMS's website and saw Liam's picture and that a bone marrow donor was needed to try and save his life because he didn't have a match. Surprised at the fact that Liam too had this "rare" disease known as HLH, she became dedicated to helping raise awareness and support for Liam and his family. Rochelle became attached to Liam immediately. She started to follow his CarePage and help spread the word whenever possible. She continued to advocate for Liam and his family by having fundraisers to help his family with medical expenses. Upon Liam's passing, she became devestated and her family could sense this. Her husband wrote her the only "note" he has ever written her telling her how sorry he was and he knew she loved Liam. Her husband came home one day and handed her an envelope with a plane ticket in it to Colorado for Liam's memorial service. He said he knew she had to go. Rochelle went to Liam's service with another person who was as deeply affected by Liam, April Zambetti. "I can't explain it, and I don't need to. My real friends know who Liam is, my kids know who LIam is, and his picture is in my living room with my other boys. Yes, he is "one of my boys". Rochelle did not know Michelle and her family before meeting Liam and now, she is one of her closest and dearest friends.

April Zambetti - Community Liason
Old Forge, PA
aprillbetti@yahoo.com

April is married and the mother of 2 children ages 9 and 3. She received her Bachelor of Science in Elementary and Special Education from St. Joseph's University in Philadelphia in 1999. She is employed by Lilly USA as a pharmaceutical rep. and is also pursuing her RN degree. April came across Liam's story and feels he came into her life for a very special reason, although she has never met him. April and Michelle are from the same area, but had not known each other until Liam's story. Prior to Liam's passing, April signed up for Hike For A Cure at Yosemite. She was dedicated to raising money for a cause she felt strongly about because of a brave little boy she had never met was fighting for his life. April joined Michelle and Chris in the hike only 2 weeks after Liam's passing. This is where an amazing friendship began. April accompanied Rochelle out to Colorado for Liam's memorial service and has since been dedicated to his cause. "I wish Liam didn't leave when he did. Somedays, the grief, anger, and sadness is so overwhelming it just washes up and takes my breath away. Other times, I swear I can feel him around me. I'm still trying to figure out what this journey is all about, but I'm thankful that this unbelievable soul chose to bring me on his journey with him." April and Michelle have a friendship that can only be explained through a common love of a little boy named Liam.

Carla Ferrara - Public Relations, Fundraising, Educational Awareness
West Pittston, PA
ferrarac@comcast.net

Megan Towne-Community Liason
Chandler, AZ
metowne@cox.net

Megan is married and has 3 children ages 3 to 7. She received her Bachelors degree (1995) and a Masters degree (1997) in Materials Science & Engineering from Lehigh University, Bethlehem, PA. Megan originally moved to Phoenix, AZ from Bear Creek, PA to work for AlliedSignal Aerospace. She has been employed with them, now Honeywell Aerospace, for 14 years. She is currently an IT Project Manager and travels the world deploying SAP, Honeywell's ERP system for its Aerospace business.
Megan fell in love with Liam right after he was first diagnosed with HLH. His aunt is a childhood friend of hers and had placed a prayer and support request on Facebook. Since then, she has not walked away. HLH awareness and fundraising is now her mission and her cause. Megan states, "I have met SO MANY amazing women and children. How could I ever walk away?"

Jennifer Mercereau- Community Liason
Greentown, PA
jenx1218@gmail.com

Jennifer is married and the mom of 2 children ages 5 and 7. She attended college out of high school, but was involved in a bad car accident toward the end of her first year. After rehabilitation, she finished college at Penn State University with a degree in Liberal Arts with concentration in family studies. Jennifer began following Liam's journey after she was asked to go to his bone marrow drive in Pittston, PA by a mutual friend. Once she saw Liam's picture, she drawn to him. She wanted more than anything to be his match. "I was no longer scared but rather eager to see him get well. I feel extreme happiness being a part of his foundation. Not happiness over the reason for all of this, but joy that I am hopefully contributing to the end of this dreaded disease. There is never a day that Liam doesn't cross my mind. He is magical and he has made me appreciate so many aspects of my life that I may have let get lost somewhere. He is a part of our lives".

DEDICATED VOLUNTEERS

Kelly Fantasia- Community Liason
Roseland, NJ
kelly.fantasia@us.gt.com

Kelly is married with 2 children ages 3 and 7. She graduated from Monmouth University with a Bachelor's degree in Business Management. She is employed by Grant Thornton in Human Resourses in New York and New Jersey for the past 5 years. Kelly's youngest child was 10 weeks premature. They went through many, many visits back and forth to the hospital within his first year of life. "There were times when people didn't know what was wrong with him and he was continually misdiagnosed. Watching your child being poked and proded is awful enough. When a doctor doesn't have an answer, that makes it so much more horrible." Fortunately, her and her family got through that difficult time in their lives. "I am dedicated to raise funds and bring awareness to this disease. Liam will always have a place in my heart!"

Gina Maldonado-Rodek Community Liason
East Brunswick, NJ
gina.maldonado-rodek@gt.com

Gina is married with two children ages 18 months and 3. She has a Bachelor of Science in Accounting from NYU and an MBA in International Business from Rutgers University. She is also a CPA and currently works for Grant Thornton International in their Regulatory Matters group.
She came across Liam's story one morning getting ready for work when she saw Rochelle, Jennifer and April on the Plaza of the Today Show. "I was in such a rush (as usual) that I just caught the phrase "a fatal disease that primarily affects infants and toddlers" and the name of the foundation. I had an infant and a toddler at home, so of course I wanted to know what they were talking about. When I got to work that morning, I went onto Liam’s Lighthouse Foundation, read Liam's story, and watched the video made by Michelle. I sat in my office and cried for three hours, no exaggeration. It was at this point I became obsessed with Liam and his story. It is all I would talk about. I would email people, talk to them and tell them Liam's story; anything to get them involved. I was on a crusade for this little boy, who I had never met, but felt such a connection to and knew he would be a part of my life forever. Here I am today, a part of the foundation working to spread awareness of HLH. I am going to spare everyone the countless tears I shed thinking about Liam and his family, and just say that Liam will always be an inspiration to me and I am dedicated to his foundation and its cause, and I am honored to work with everyone that is a part of it".

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