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Erdheim-Chester Disease Global Alliance
A Nonprofit 501(c)(3) Organization
P.O. Box 775, DeRidder, LA 70634
"Supporting Those Affected by Erdheim-Chester Disease"
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ECD Global Alliance
December/January Newsletter
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What's Inside
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ECD Research Grant Awarded
The 2017 ECDGA Research Grant of $50,000 has been awarded to MSKCC.
Memorial Sloan-Kettering Cancer Center in New York received the 2017 research grant in the amount of $50,000. Principal investigator, Benjamin H. Durham, MD, will lead the study Defining the Cell-of-Origin of Erdheim-Chester Disease. The bone marrow cells from ECD patients will be studied to try to determine the cells that cause ECD. With this information, it may be possible to create a successful model of ECD that can be used for future studies by scientists from around the world. A secondary goal for this study will be to compare the gene profile of ECD cells with the cells of other blood cancers that are often seen in ECD patients. Dr. Durham is a hematopathologist and molecular genetic pathologist who has previously identified various genetic mutations associated with ECD. These findings have led to immediate therapeutic options for patients.
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Join the rare movement on
February 28, 2018!
The main objective of the annual Rare Disease Day is to raise awareness among the general public and decision-makers about rare diseases and their impact on patients' lives. Visit the official Rare Disease Day website for digital materials and ideas on how to raise awareness of ECD during this national day of awareness.
President of the ECDGA, Kathy Brewer,
was invited to sit on a panel to discuss her experience on the topic "Collaborating for Successful Research" at the NIH Rare Disease Day 2018 event
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Attention all patients near the Washington, DC area! [Respond ASAP]
Please take advantage of the opportunity to be interviewed for the FDA website! The Patient Advocacy Staff at the FDA are developing a video to launch on Rare Disease Day. They will post 3 to 5 minute videos of patients describing their experiences related to living with a rare disease - If you are interested in working with the FDA staff on such a video, please reply to this email to get connect and start this project as soon as possible.
How can you raise awareness this RDD?
- Post the ECD Fact Flyer at local hospitals & clinics.
- Post your picture on media to show that you are strong and joining the fight against ECD!
- Suggested post: "I'm one in a million. I'm rare and I'm strong." #RareDiseaseDay2018 #ErdheimChesterDisease #ECDAwareness #ShowYourRare
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To be interviewed about your ECD journey as a patient, family member, or advocate, to be published for RDD, just reply to this email to contact us.
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Website Update
The ECDGA website has been updated, please check out what's new, including
New York event photos, a p
rintable ECD Trial Guide, and n
ew resources.
Learn More
Learn More
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Fundraiser News
In case you missed it, the 2017 Year-End Fundraiser reached a total of $79,687.07! Thank you to all that advertised, donated, and celebrated this event with us!
Special thanks to patient, Iris, and her husband,Tom Vagnini, for fundraising during our Year-End campaign. A 2018 desk calendar was beautifully designed and created with Iris's exceptional photographs taken in her personal garden. The calendars were complete with birds, florals, and inspirational quotes. The advertisement and sales of this product created an opportunity to raise awareness of ECD and earned almost $2,000 for the organization!
Total Donations We are very pleased to announce that through the efforts and generosity of the ECD community and their friends, the organization was able to raise a total of $207,717 dollars total for 2017! This money has supported the 2017 ECD Patient and Family Gathering, Medical Symposium and awarded Research Grant, among other projects."
For ideas and resources to help jump-start your fundraiser this year, visit us
here.
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Physician Awareness Near You
The ECDGA wants to increase physician awareness and we need your help! Initiating a medical presentation in your area is not as difficult as you might think. Let your doctor know that you want to plan an ECD lecture at the local medical university and ask for a referral to connect with the ECDGA.
We are also looking for a volunteer to help manage these communications with our members and the medical community, please let us know if you are interested in helping with this important project!
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2018 ECD Patient & Family Gathering
The ECDGA is partnering with Dr. Julio Hajdenberg and
Orlando Health to host this year's annual meeting in
Orlando, FL. The patient meeting will be held on November 16, 2018,
which will include presentations regarding ECD care and management. Join us also for the Welcome Social on the evening of November 15. Registration will be open for these events soon. Stay tuned.
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Welcome New Caregiver Chat Lead
ECD caregivers recently welcomed Julie Jones as the newly appointed Caregiver Chat Lead. Julie has been dedicated to the ECD community since her late husband, Gurnal Jones, III, was diagnosed with ECD in 2012. As an experienced caregiver, Nurse Anesthetist, and long-time friend of the ECD family, she is an exceptional volunteer for this role. Thank you Julie for your dedication and loyalty to the ECDGA and those it serves! To join other ECD caregivers for private online chat sessions or for more information, please contact us via this caregiver form.
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Tumeric Smoothie
Here's a great recipe to add to your new-year routine!
An ECD patient kindly shared this simple smoothie recipe for all to enjoy. She finds this daily serving effective in her pain management and hopes you find it helpful.
- Banana (and/or strawberries)
- Coconut milk or almond milk (cow's milk not recommended)
- 1/8 teaspoon of turmeric
- 1/8 teaspoon of cinnamon
- 1/8 teaspoon of ginger
- Ice
- Place ingredients in this order into your blender.
- The amount of milk and ice are dependent on how you prefer the consistency of the smoothie.
*PLEASE NOTE: This is one patient's experience. Please consult with your medical team if you have any questions whether this would be appropriate for you.
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FUN FACT
Erdheim-Chester Disease was mentioned on the series "Grace and Frankie," Season 4 Episode 3 minute 4:29!
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| Congrats to Jessica Corkran on her recent promotion to Executive Director of the ECDGA. Jessica has been serving the ECD community for almost 4 years as the Communications Director. "Serving the ECDGA members has been humbling and rewarding. I am honored to be welcomed as the Executive Director and I look forward to moving closer to a cure for Erdheim-Chester Disease alongside this amazing community. No matter how rare this disease is, I have an immense amount of hope for the future." -Jessi
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