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.
There are not enough words to describe our THANKS to the Sobi-North America team for supporting our rare community for Histiocytosis Awareness Month! On behalf of the patients and angel families recognizing their names on this shirt, WE THANK YOU!!
Alacrita, an independent research company, are looking for people who care for children with HLH, and young adults (18-30 years inclusive) who have recovered from HLH, to take part in a short study to understand how HLH affects children and the people who look after them. We are contacting you as a subscriber of Liam’s Lighthouse Foundation.
If you contact Alacrita to let them know you are interested in taking part in this study, they will first arrange to speak to you by telephone you to ask a few questions to determine whether you are eligible. This is a standard step for all studies, as researchers want to recruit people with particular characteristics.
If you are eligible, the Alacrita research team will arrange a convenient time for you to take part in an interview with a trained interviewer. This can be by telephone or in-person, either at your home or at a mutually convenient place.
If you then agree to take part in the study, Alacrita will send you a letter confirming the date, time, and place of your interview by post or email, together with more detailed information about the study and a Background Questionnaire for you to complete before the interview.
During the interview you will be asked questions about your child with HLH and your experiences of caring for them. The interview will take about an hour. You will receive a [$100/£75] voucher to cover any costs you incurred by taking part in the interview.
You are free to withdraw from the study at any point, and you do not have to give a reason. We do hope that you will take part, as your participation will contribute to vital understanding about patients and their parents/primary carers living with HLH.
If you are interested in taking part, please contact the study research team by filling out the form below to send an email to the study team at: HLH@alacritaconsulting.com
Dr Annabel Nixon
Help us Fund a Cure
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