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ECD Global Alliance
2017 Newsletter
What's Inside
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Caitlyn Captures Hope
This inspiring young advocate shares her thoughts on ECD.
Meet Caitlyn Walch, patient advocate star in the making. As an 11-year-old granddaughter of ECD patient Tony Giambra, she has been armed with lots of information about Erdheim-Chester disease. "She is constantly informing people about ECD and knows all about those dreaded histiocytes," says grandmother Margaret "Peg" Giambra.
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Caitlyn with Dr. Diamond while in New York.
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Caitlyn's special bond with her grandpa has driven her mission to fight ECD alongside him. She has attended many doctor's appointments and sat through many hours of hospital visits. She has raised awareness of this disease in her school with her peers and educators as well, making it known what a terrible, rare disease has affected her beloved grandpa. This year, she accompanied her grandparents to the Annual ECD Patient and Family Gathering to show her unwavering support to her family and the ECD community. The event inspired her to make an ECD ribbon ornament with a photo of herself and Dr. Diamond for her Christmas tree. And of course, she made one for her grandpa to enjoy as well.
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Among her awareness efforts, Caitlyn also lifts Tony's spirits and keeps him motivated to continue fighting every day. Peg states
"She is his best medicine and the only one who can get him to do his exercises!"
"I, Caityln Walch, think ECD is very important. My grandpa was diagnosed with ECD about 2 years ago. That didn't stop him though. Ever since I was born my grandpa took care of me so I will take care of him. And that's why ECD is so important to me. Don't give up because of ECD, it should only make you try harder."
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Peg and Anthony Giambra with Amy and Caitlyn Walch at the 2017 Patient Gathering in New York.
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About the ECD Global Alliance
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Our Mission
The ECD Global Alliance is dedicated to awareness and education, support, and research related to Erdheim-Chester Disease. Visit
www.erdheim-chester.org/mission to learn all the ways the 501(c)(3) organization focuses its activities and programs to fight ECD and help those affected by the disease.
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Financial Status
As stewards of each donation given to the community, the ECDGA takes each transaction and hour of work very
seriously. It strives to
meet its budget so
that the majority of
contributions go directly
to supporting the ECD Community
and funding Erdheim-
Chester Disease
research.
In the year ahead the
organization must
fund ongoing
commitments such as
previously awarded
grants, the ECD
registry development,
staff salaries, annual meetings for patients, families, and medical professionals
, and
the awarding of a
new research grant.
The execution of future projects is dependent on financial support.
The ECDGA relies almost exclusively on private contributions from
patients and their families and friends.
Occasionally, the ECDGA is fortunate enough to receive a grant or sponsorship to supplement donations, but the opportunities for a small charity such as the Global Alliance are sparse.
Please see the graphic below for details of the current budget.
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2017 Patient and family members at the New York Gathering.
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2017 Event Highlights
During the ECD
Patient & Family Gathering this October, 150 participants engaged in learning more about ECD, meeting others affected by the disease, and supporting one another with education and experience.
Thank you to all that participated in making this event a success! Fifteen volunteers donated their time to the event planning and on-site tasks. Over $3,500 was raised during the event to support the organization through awareness item sales and donations. A grant was also received from Genentech Pharmaceuticals to support this event.
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A special thanks to our co-hosts, Dr. Eli L. Diamond and Dr. Mark Heaney, and the main event sponsor, Reverend Charles Balnaves, for making this event possible.
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"A thorough (profound) view of various or all aspects of ECD & drugs"
- ECD Patient
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"Very helpful to meet others w/ ECD for the first time." - ECD Patient
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Thank you to this year's Patient Gathering speakers for delivering the latest information in ECD
treatment, care, and research.
Presentation slides are available on the
website
HERE
. Photos will be loaded as soon as possible.
The Q&A with the Experts session was also very helpful to the families seeking more information about their specific health concerns. The panelists were knowledgeable and worked very well together to ensure the audience got an answer they could take back to their physician. Special thanks to the moderator and Board of Director, Dr. Juvianee Estrada-Veras.
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ECD Medical Symposium Attendees
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Annual Medical Symposium
A total of 76 medical professionals, representing six countries, gathered at this annual meeting in New York, NY on October 26. The symposium united medical professionals in discussing of studies, experiences, and knowledge regarding Erdheim-Chester Disease. In this space, medical professionals were encouraged to present findings and knowledge to other attendees in the medical field. Poster presentations were also displayed to provide information on treatments and studies.
The ECDGA feels this event is critical in providing crucial information and time for face-to-face collaboration to encourage the growing interest of Erdheim-Chester Disease research for today and into the future. The attendees agree that this is an important part of treating patients with the best care possible. See what they had to say.
"[The ECDGA] has been very supportive with my research."
- Ferrarini Marina, MD
"ECDGA meetings and physician community taught me everything I know."
- Roei Mazor, MD
"The professional connections have been very helpful to my patients."
- Mark Heaney, MD, PhD
"[The ECD Medical Symposium] has broadened my knowledge and increased my enthusiasm in ECD."
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| "[The ECD Medical Symposium] brought together people who are interested in advancing the field which in turn advances the care of our patients." - Dr. Ronald Go, Mayo Clinic |
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Worldwide Support for Those Affected by ECD
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The
ECD Care Center Network
serves to relieve some of the burden many ECD patients face when seeking medical care due to the rarity of this disease. A recent Care Center meeting allowed these knowledgeable and caring doctors to collaborate on best practices and communication improvements to ensure this network continues to keep the patient first.
Seven new ECD Referral Care Centers joined the global care network in 2017.
More institutions join an elite group of hospitals willing and able to treat ECD. New locations:
Austria, Australia, China, Israel, United Kingdom, and Nashville, TN
USA
Centers that have treated less than five ECD patients are considered
Emerging ECD Care Centers. New emerging centers are located in
Canada and
Belgium.
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Awareness
The 3rd annual ECD Awareness Week educated medical professionals, patients, caregivers, and the public about ECD through patient quotes, sharing patient stories with media, and hosting fundraising events.
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Before Isis Gauzens took her twin 9-year-old boys to visit their father in the ICU, she wanted to prepare them for what they'd see. To do that, she decided to speak to them in a language they'd understand: Legos.
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Physicians Contribute
- The NIH staff spread the word about ECD during AW via their intranet
- Brazilian ECD Care Center physician, Dr. Andre Abdo, created and shared graphics with the Portuguese community
- ECD Board of Directors member, Dr. Juvianee Estrada-Veras, shared information via LinkedIn
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Community Involvement
- 37,000 engagements through social media pages
- $2,800 was donated
- State of Louisiana proclaimed ECD Awareness Week
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Member Contributions
- Surveys completed about patient/family journey
- Content created for the campaign
- Awareness raised at area health centers and on social media
- Fundraisers hosted
- News station interviews
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Local DeRidder, LA club learns about ECD and shows their support with ECD awareness bracelets.
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Physician Awareness
Grand Rounds were organized this year to help residents learn more about the very rare Erdheim-Chester disease and to educate them on the current state of research progress and treatment options.
At the Louisiana Cancer Research Center, Louisiana State University and Tulane medical students and faculty listened to researchers from the National Institutes of Health (NIH) discuss the agency's Undiagnosed Disease Program (UDP) and research being done in Erdheim-Chester Disease (ECD) as part of the UDP. Thank you Dr. William Gahl and Dr. Juvianee Estrada-Veras for dedicating time to this important project.
Learn More
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Dr. Gahl, Kathy Brewer, and Dr. Estrada-Veras
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To host or organize a medical professional ECD awareness event at a local university or medical institution contact support@erdheim-chester.org for more information and help.
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Dr. Janku Speaks at LSUHSC Shreveport
Medical residents and physicians at Louisiana State University (LSU) Health Sciences Center (HSC) in Shreveport learned about Erdheim-Chester disease (ECD) from ECD Care Center lead, Dr. Filip Janku, from The University of Texas MD Anderson Cancer Center.
Learn More
Exhibition at USCAP
Pathologists eagerly engaged with ECDGA exhibitors with
pathology resources
to raise their awareness of ECD at the 2017 United States and Canadian Academy of Pathology (USCAP) annual conference in San Antonio, TX in March.
Learn More
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| David Hyman, MD; Omar Wahab-Abdel, MD, Eli L. Diamond, MD |
Research
FDA Drug Approval
This November, the FDA approved vemurafenib (Zelboraf) for the treatment of Erdheim-Chester Disease in patients with the BRAF V600 mutation. This is the first ever approved treatment for ECD. This means that BRAF-positive ECD patients in the US will have much easier access to this treatment that has shown amazingly good results. This breakthrough is the result of hard work on the part of many. Genentech is the pharmaceutical company who took the data to the FDA to ask for approval. The MSKCC team (Eli Diamond, MD; David Hyman, MD; Omar Wahab-Abdel, MD) was the leader of the study that provided the data for the FDA decision. And, of course, the patients and family members who had the courage to be part of the trial, were the ones who made it possible for data to be collected.
Learn More
New Research Grant
The 2017 research grant is still in review with our Grant Review Board and will be announced soon. Many innovative proposals were submitted and the new projects show great potential.
ECD Patient Registry
The ECD Patient Registry is a medical database collecting information and/or samples from patients diagnosed with ECD. This data will be used to help scientists advance our knowledge of ECD and its treatment. More information will be sent to ECDGA members soon, including how to enroll.
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Your Fundraisers Helped Make It Possible
Thank you very much to the community members that
raised
awareness
a
nd funding thr
oughout 2017.
Your
commitment makes the work of the
ECDGA possible.
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Arizona restaurant, Gabby's Grill, donated 25 percent of all receipts contributed during this one-night event. The honorary patient and her husband, Leslie and Rich Adler, also raised awareness and found support in their community by telling their story to local news.
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ECD patient, Ashley M. hosted her third restaurant fundraiser event in Highland, IN. 10% of diners' meals went to support the ECDGA.
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Lofaro Community Fundraiser
ECD patient, Joe Lofaro, was supported by friends and community members during ECD Awareness Week this past September. After local media interviews, supporters rallied together and made a donation to the ECDGA.
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The ECDGA looks forward to these activities with your help!
Support
Host 6th Annual International ECD Patient & Family Gathering.
Encourage engagement and provide information through chat sessions, social media, website, and regional introductions.
Continue to build the ECD Care Center Network around the world to aid patients in finding expert care options closer to home.
Research
Build the
ECD Registry
by encouraging members to participate.
Host the 6th Annual International ECD Medical Symposium.
Fund research via a grant.
T
he organization is steadfast in exploring the diagnosis, cause, and treatments for Erdheim-Chester Disease.
Grants dedicated to ECD research are awarded every year.
Awareness & Education
Promote ECD Grand Round Presentations. These talks are an important teaching tool and ritual of medical education and inpatient care, consisting of presenting the medical problems and treatment of a particular patient or disease to an audience consisting of doctors, residents, and medical students.
Creating an ECD Physician Guide would provide a resource for clinicians about ECD to facilitate the timely diagnosis and treatment of their patients. Family physicians, specialists, and other primary care providers play an important role in early identification and long-term management of patients. It is important for specialist and generalist alike to remain as current as possible in the treatment of rare medical conditions.
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Support the ECD Community
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Let's join hands! Here are a few ways to support the ECDGA.
Donate at
www.fundECD.org
or by sending a check to ECD Global Alliance, P.O. Box 775, DeRidder, LA 70634
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Become a monthly contributor for as little as $25 a month to sustain support for those affected by ECD. Go to
www.fundECD.org, make a donation, and select your amount from the drop-down bar. Or contact the ECDGA for monthly transfer information.
Contact your employer's human resource department about setting up a
company matching gift program
benefiting the ECD Global Alliance.
During this holiday season
make an end-of-year contribution or encourage your loved ones to support the organization in lieu of gifts
by writing a letter or email discussing why contributing to the ECDGA is important to you.
Do your holiday shopping at
AmazonSmile.com
.
0.5% of your purchase will go to support the ECD Global Alliance. Select the
ECD Global Alliance as your charity of choice and start shopping
!
Volunteer your time and talents to the work of the organization, just complete the online form to sign-up,
Volunteer Form.
Raise awareness of ECD and support fellow families fighting this disease by writing a story about your journey and sharing it on
the ECD Mighty page.
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HELP THE ECDGA WIN $10,000!
by Thursday, Dec 7 at midnight. The prizes are up to $10k to be awarded to the ECDGA! It only takes a second, follow this link:
https://goo.gl/q7dLvF
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The ECD Global Alliance | P.O. Box 775, DeRidder, LA 70634 USA
The ECD Global Alliance is a 501(c)(3) organization
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Thank You
"What we have done for ourselves alone dies with us; what we have done for others and the world remains and is immortal."
-Albert Pike
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Advocates and members,
you build up this community one conversation at a time, through networking, sharing your story, supporting one another daily, and
saying "Yes
, I choose to fight ECD
."
Medical teams,
doctors, researchers, nurses, office staff,
your impact
does not stop at the office visit.
Instead,
you collaborate, educate, research, find answers, and share. Your efforts to bring expert care to this community will forever be appreciated, thank you.
Donors
, you are the lifeline, the hope for a future, the promise for more to come, thank you for finding this community worthy of your
hard-earned
dollar!
Volunteers
, you are the glue that holds the work of the organization together. Without you, we only have ideas.
Thank you to the 20+ volunteers that dedicate over 1,200
hours a year
of
time carrying out
the
work
of the ECDGA.
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ECD Facts
Erdheim-Chester Disease (ECD) is a rare, slow-growing blood cancer that may originate in the bone marrow or precursor cell.
- It is debilitating, under diagnosed, and can result in organ failure unless successful treatment is found.
- Common early symptoms may include bone pain in legs and knees, fever, night sweats, weakness, fatigue, excessive thirst and urination, balance issues, lower back pain, bulging eyes/vision issues, shortness of breath and heart issues.
- ECD results in the overproduction of histiocytes, a type of white blood cell that normally fights infection and is created in bone marrow.
- The disease affects different organs in different people, yet it can affect virtually every organ system.
- Usually diagnosed by biopsy, scans (bone, PET, and MRI), and clinical symptoms.
- Most treatments are off-label. These include targeted therapy, immunotherapy, chemotherapy, immunosuppressants, and steroids, all of which have been used with varying degrees of success. Vemurafenib is currently the only FDA-approved drug for ECD.
- Breakthroughs identifying genetic mutations found in ECD patients are leading to targeted and effective treatments for patients.
- ECD research, with extremely limited funding, is at the forefront of science and "precision medicine," illustrating that therapy targeting a specific genetic mutation can be effective, regardless of where cancer originates.
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Thank you for reading our newsletter! Here's to a great 2018!
Sincerely,
ECDGA Staff and Board of Directors
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The ECD Global Alliance | P.O. Box 775, DeRidder, LA 70634 USA|
The ECD Global Alliance is a 501(c)(3) organization
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