We are unique in the rare disease community
Tiffany Ferry, Founder and President of Lymphatic Malformation Institute
As the President of the Lymphatic Malformation Institute, we are proud to share the same vision with LGDA and LGDA Europe – to advance our basic understanding of the lymphatic system and advance our understanding of CLAs, including Generalized lymphatic anomaly (GLA)/Lymphangiomatosis, Gorham-Stout disease (GSD), Kaposiform lymphangiomatosis (KLA), and Central Conducting lymphatic anomaly (CCLA).
 
Most recently, LMI, LDGA, and LGDA Europe are supporting the Alfie Milne Young Investigator award which is open to researchers around the world. This $25,000 grant supports early career researchers, such as postdoctoral and clinical fellows or instructors, who are pursuing promising research ideas related to CLA’s(complex lymphatic anomalies). The award is made possible by a charitable donation from LGDA UK, highlighting the collaboration within our community. 
 
Together, we continue to overcome the challenge shared by many rare disease communities – identifying and funding relevant scientific and clinical researchers, which hopefully leads to discovering new treatment options, and ultimately, finding a cure.
 
Since 2010, LMI has provided over 50 grants funding such research as the development of mouse models of our diseases to identifying genetic factors and a patient registry. 
 
The Million Dollar Bike Ride (MDBR) is the CLA community’s biggest fundraising event. UPenn turns each dollar into two by matching our contribution up to $30,000. All funds raised go directly to CLA research. Since 2015, we have raised over $900,000 in grants for researchers around the world.
 
YOU help create our success! Together, we continue to make a difference and move our entire community towards the day where no one will be afflicted by these life-threatening diseases.
Awareness Day 2023
Thank you!

Thank you for participating in LGD Awareness Day and thanks to Rare Revolution and AllStripes for showcasing CLAs on their social media.
Don't forget to tag us on social media, use the hashtags
#lgdalliance #lgdallianceeurope #rarediseases #lgdalliance #rarediseaseadvocate #ComplexLymphaticAnomalies 
Taking the Mystery
Out of Scientific Research
LGDA is creating plain language summaries of our scientific presentations for patients and the community.

Our first summary is on Dr. Bryan Sisk's study "Barriers to Expert Care for Patients" which identified common issues that make it hard for patients to get medical help and encourage providers to take time to learn about the challenges they face.

Dr. Sisk received the 2021 MBDR grant for this research.


Research Papers:


CLA Seminar Series
Patient Story - Amber McCall
Years of symptoms didn’t add up. Doctors were confused by test results that didn’t lead to a definitive diagnosis.

Much of her childhood was spent in the school nurse’s office with migraines. Medical professionals couldn’t figure it out.

When Amber contracted meningitis for the second time in her early 20s, she underwent a battery of tests. One scan led to a diagnosis of Chiari malformation in which the brain stem hangs below the skull. That, doctors figured, was the source of her migraines.

During decompression surgery, it was discovered her spine was riddled with holes. It was determined McCall had lymphangiomatosis.


Amber's new book "Sand Dollars and Swiss Cheese" details her story. She would like to think that her rare disease doesn't define her-it's not who she is, after all. And yet in conjunction with many other things, it has shaped who she has become.

Available at:
Have you joined the LGDA International Patient Registry for Complex Lymphatic anomalies?

We encourage those newly diagnosed with a CLA to join the patient registry (parents can join for their children). Each registry profile adds to our body of knowledge. We learn where patients are located, what symptoms they are experiences, how they are being treated by their doctor, and what challenges they face in getting care.  
International LGDA Patient Registry
Act Now!
Each registry profile adds to our body of knowledge. We learn where patients are located, what symptoms they are experiences, how they are being treated by their doctor, and what challenges they face in getting care.

This registry has no borders and is not bound to a medical institution or a specific type of research. If you have a CLA, wherever you are in the world, you can join.  
 
Already part of the registry? Don't forget to come back and retake the survey to update your information.

YOU make a different in science

This review on Kaposiform lymphangiomatosis (KLA) examines the multidisciplinary and comprehensive information on a KLA patient’s case. In addition, it describes current therapeutic options, outlines the important research areas, and the challenges of patients and their families. 

This study identified alterations of miRNA in GSD. miRNA is a type of RNA found in cells and in blood which can bind to messenger RNAs (mRNAs) to block them from making proteins. These alterations could directly target genes and pathways associated with the absence of bone formation and angiomatous proliferation (thin-walled blood vessel proliferation with bone destruction), that can be used as potential biomarkers for GSD.

This study hypothesized that the types of fatty acids in the diet impacts the potential for lymphatic dysfunction and accumulation of chyle in individuals with generalized lymphatic anomaly. Using a mouse model of GLA, the researchers found that a chronic diet high in both saturated and unsaturated fats increased the risk of chyle accumulation in GLA mice. However, a single large high fat meal resulted in chyle accumulation in the chest of GLA mice resulting in progressive difficulty breathing and an increased risk of death.
Our next newsletter will be sent in August.