Meet Your Mascot!
Dynamite the Histio Warrior Dragon Mascot will travel to Cincinnati this weekend for the 2019 Histio Family Conference at the Cincinnati Zoo & Botanical Garden
Physicians and other healthcare providers will gather on Friday, Sept. 20, at the Cincinnati Zoo for an in-depth workshop where they will learn how to diagnose and manage patients with hemophagocytic lymphohistiocytosis (HLH) and Langerhans cell histiocytosis (LCH). Leading experts will discuss the latest research findings and treatments, and what is on the horizon for these histiocytic conditions.
Patient Families and Physicians will gather for a private event Friday evening at the Cincinnati Zoo & Botanical Garden where Dynamite the Histio Warrior Dragon will make an appearance!
Saturday, Sept 21st a Family Conference will provide general information to patients and families in the histiocytosis community as well as an opportunity for families to learn and connect with and support one another.
The "Dynamite Care Clinic" table will provide coloring pages and check up stations for stuffed Dynamites.
Please Note: Dynamites will not be available for request pick-up in Cincinnati and will be mailed to their residence after this event.
Boo Histio! 2019 Glow-In-The-Dark T-Shirt Campaign
By ordering a shirt, you will help ship a Dynamite to patients with Histiocytosis around the world!
The Dynamite the Histio Warrior Dragon Program Re-Launches just in time for Histio Awareness Month and Dynamite's Birthday! See Dynamite the Mascot in Cincinnati September 21st!
As many of you know the Dynamite Program has had some struggles with funding; the request system has been down while we worked to improve the technical side of things and raise the funds we needed to continue the Dynamite Program.
Well, thanks to everyone who has donated and many long work hours, WE ARE READY! Dynamite’s new and improved system is OPEN for your requests!
There are, of course, some requirements that must be met to ensure all our Histio warriors receive their Dynamite efficiently.
So far the Dynamite Program has donated over 600 Dynamites to Histio Warriors around the world! We are committed to reaching every Histio warrior who would like to receive a Dynamite. Please help us by donating and/or sharing our Facebook, Instagram, and Twitter pages. Thank you all so much! We greatly appreciate every single one of you!!
Jennifer, Director of the Dynamite Program
To increase awareness of HLH and support for families, Birmingham Women's Hospital, UK will host two parallel conferences on HLH this September: one for medical professionals and one for families of children with HLH.
These conferences are supported by funds raised by the Mole family and friends in memory of Tom.
Start: 21 September, 2019 at 8:30am End: 21 September, 2019 at 5:00pm
The day before Halloween in 2017 my 9 week old son spiked a 102.5 fever. He was a premie, born 7 weeks early. It was concerning he had a fever, not only because he was so young and we were good about keeping him isolated and away from viruses, but also because he did not have any other symptoms that would indicate he had caught a virus.
After about a month of frustrating hospital visits, fighting with doctors to get him admitted, declining labs, multiple blood and platelet transfusions, and a PICC line placement, our son received the diagnosis of primary Hemophagocytic Lymphohistiocytosis commonly known as HLH.
I remember the day the doctors first mentioned HLH. It was before they did a bone marrow biopsy. The doctor was talking with us and said they are looking at two possible diagnoses, leukemia or HLH. I had never heard of HLH before, but in that moment I remember thinking, “anything is better than Leukemia so hopefully it’s HLH.” Once the doctor left the room I googled HLH and the first thing I found was about a family who lost both of their sons to HLH. I read about how the lack of awareness often led to a misdiagnosis and a quick death. I read that if it was primary HLH he would need a bone marrow transplant. I was so scared. This was all very overwhelming.
As we were waiting for Nolan’s official diagnosis and genetic results to return I found an HLH support group on Facebook. This group connected me with so many people and organizations who were out there to help us in any way possible. It was so amazing to connect with people who understood what we were going through. It was a light in such a dark time.
Through this group I heard about Liam’s Lighthouse Foundation and Dynamite the Histio Warrior Dragon. We received Nolan’s histio warrior in the mail about a month before his transplant! We chose Dynamite to be blue to represent HLH, but blue has actually become Nolan’s favorite color!
We do our best to share Nolan’s story to help encourage others and fight alongside them just as we had so many people in our corner during Nolan’s HLH battle.
Join us in raising awareness this September during Histiocytosis Awareness Month by sharing the stories of your Histio Hero. Complete the form here.
Golf Tournament Celebrates Child’s Life, Puts Spotlight on Rare Disease
11th annual event hosted by Liam’s Lighthouse Foundation to raise awareness and money for Hemophagocytic Lymphohistiocytosis (HLH) research.
WHAT: Liam Schulze 11th Annual Memorial Golf Tournament
WHO: Liam’s Lighthouse Foundation
WHERE: StoneHedge Golf Course
55 Stonehedge Drive
Tunkhannock, PA 18657
WHEN: Sunday, September 22, 2019 from 12:30 p.m. - 5:00 p.m. ET
COST: $100 per golfer; $100 per team of 4 (fee includes green fees, cart, dinner, t-shirt, goodie bag, prizes); $30 for dinner only
DETAILS: On September 22, 2019, the Liam Schulze 11th Annual Memorial Golf Tournament will be held at StoneHedge Golf Course to raise awareness about and money to support Hemophagocytic Lymphohistiocytosis (HLH) research. All proceeds from the tournament, hosted by Liam’s Lighthouse Foundation, helps to further cutting-edge medical research and find a cure for HLH.
HLH is a life-threatening immunodeficiency that often go misdiagnosed or underdiagnosed as initial symptoms may mimic other problems such as common infections. Symptoms may include persistent fevers, rashes, enlarged spleen, liver and/or lymph nodes, etc.
“Ten years ago we lost Liam to this horrible disease. HLH took my baby boy from the most beautiful blonde haired, blue-eyed, happy and active child, to a one that was unrecognizable and could not move on his own due to treatment. This horrible disease took everything from him and us,” said Michelle Schulze, president and founder of Liam’s Lighthouse Foundation. “We continue to celebrate my precious son Liam via the work of the foundation and at events like this year’s memorial golf tournament. The support from the community for the golf tournament and the foundation in general has been overwhelming and we are so grateful for everyone’s help in continuing Liam’s fight to make a difference.”
Advanced registration for the Liam Schulze 11th Annual Memorial Golf Tournament is encouraged due to ticket demand. Event attendees will receive dinner, goodie bags, t-shirts, as well as other prizes as part of a raffle with prizes from local businesses. Anyone interested in participating, but not golfing, can attend the post-tournament dinner.
To learn more about the Liam Schulze 11th Annual Memorial Golf Tournament, HLH and other histiocytic disorders as well as Liam’s Lighthouse Foundation, please visit www.LiamsLighthouseFoundation.org.
About Liam’s Lighthouse Foundation
Liam’s Lighthouse Foundation (LLF) is a non-profit founded in 2009 to support a grieving mother who lost her 20-month-old son to Hemophagocytic Lymphohistiocytosis (HLH). The foundation is focused on raising funds to support critical research for HLH and other Histiocytic Disorders, supporting families on their Histio journeys, and educating healthcare professionals, hospitals, and the community about the disease and treatment options.
Liam’s Lighthouse Foundation
Submit Your Story!
Every September, the Liam's Lighthouse Foundation and the histio communities around the world join together to raise awareness for histiocytosis. By working together we can spread awareness and educate others about histiocytosis.
This year we are sharing the stories of our Histio Heroes. Submit your story using the form below, we will be sharing them throughout the month of September. Keep an eye on our Facebook, Instagram, LinkedIn and Twitter!
How to raise awareness this September!
1. Share your story using the form below.
2. Create a fundraising page or donate to one!
3. Share these stories or fundraising pages on
your social media platforms.
4. Spread the word - tell your family and friends
of the strides Liam's Lighthouse Foundation
Your story may be featured on our website and Liam's Lighthouse Foundation's Official Facebook, Instagram, LinkedIN and Twitter accounts.
Learn More & Sign Up at the bottom of this post!
Create a Fundraising Page or Consider Making a Financial Contribution
FOR CALENDAR & EVENTS LISTINGS
Mary Sullivan | Mary@LiamsLighthouseFoundation.org | 401.339.2658
5K to Fight Histio Puts Spotlight on Rare Diseases
7th annual event hosted by Liam’s Lighthouse Foundation to raise awareness and money for histiocytic research.
WHAT: 5K to Fight Histio
WHO: Liam’s Lighthouse Foundation
WHERE: Hudson River Park – Pier 84
555 12th Ave
New York, NY 10036
WHEN: Sunday, July 21, 2019 from 8:00 a.m. - 12:00 p.m. ET
On July 21, 2019, the annual 5K to Fight Histio will bring together families and leaders in the histiocytosis community to raise awareness about and money to support Hemophagocytic Lymphohistiocytosis (HLH) and histiocytic disorders. Now in its 7th year hosted by Liam’s Lighthouse Foundation, the 5K run/walk will take place at New York City’s Hudson River Park with proceeds funding cutting-edge medical research.
“Seven years ago, the 5K started out as a group of friends trying to support a grieving mother who lost her 20-month-old to HLH. In that short time, we’ve not only raised thousands of dollars to support critical research, but more importantly we’ve created a supportive community for those impacted by HLH and other histio disorders,” said Michelle Schulze, president and founder of Liam’s Lighthouse Foundation. “We’re excited to host hundreds of histio families from all over the world – including South Africa – at this year’s event, where we’ll come together to celebrate life and the progress we’ve made in taking on these rare disorders.”
Histiocytic disorders are a group of life-threatening diseases that often go misdiagnosed or underdiagnosed as initial symptoms may mimic other problems such as common infections. Symptoms may include persistent fevers, rashes, enlarged spleen, liver and/or lymph nodes, etc. A swift diagnosis is key to improving outcomes, as are expanding treatment options for these patients.
To learn more about HLH and other histiocytic disorders as well as Liam’s Lighthouse Foundation, please visit www.LiamsLighthouseFoundation.org.
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