The Waldenstrom’s Weekly

February 25, 2022

Volume 2, Issue 7

The International Waldenstrom’s Macroglobulinemia Foundation (IWMF) is dedicated to supporting and educating everyone affected by WM while advancing the search for a cure. The IWMF provides access to The Waldenstrom’s Weekly as a free service to WM community members to share WM related news and events. For more information, please contact info@IWMF.com

SPECIAL ANNOUNCEMENT

RARE DISEASE DAY
Monday, February 28th

Logo Rare Disease Day
Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.
 
Since its creation in 2008, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse– but united in purpose.
 
Rare Disease Day is observed every year on 28 February (or 29 in leap years)—the rarest day of the year.
 
Rare Disease Day was set up and is coordinated by EURORDIS and 65+ national alliance patient organisation partners. Rare Disease Day provides an energy and focal point that enables rare diseases advocacy work to progress on the local, national and international levels.
 
Though Rare Disease Day is patient-led, everyone, including individuals, families, caregivers, healthcare professionals, researchers, clinicians, policy makers, industry representatives and the general public, can participate in raising awareness and taking action today for this vulnerable population who require immediate and urgent attention.
 
By sharing your colours via social media, events, illuminating buildings, monuments and homes, by sharing experiences online and with friends, by calling on policy makers and shining the light on people living with a rare disease, collectively we aim to change and improve lives of the 300 million people worldwide.

EDUCATION

NEXT WEEK!

The LLS-IWMF Living Well with WM

Free Virtual Program

February 23, 2022 at 6:30PM U.S. ET

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A Virtual Educational Conference for Patients, Caregivers and Healthcare Professionals

Tuesday, March 15, 2022
5:30PM – 7:00PM U.S. Eastern Time

This program is designed to provide attendees with essential information that will help you participate more actively and confidently in decisions about your WM treatment and survivorship.
 
Waldenström Macroglobulinemia (WM) patients, caregivers, family and friends will gain a better understanding of:
 
  • WM treatment, including standard care and clinical trials
  • Strategies to make informed decisions about treatment
  • Tips for communicating with your health care team
  • Strategies to manage disease and treatment side effects
  • The impact of COVID-19 and vaccinations 
  • Strategies for managing ongoing cancer survivorship issues, including financial and employment challenges, as well as psychosocial issues
  • Resources available in your local community, at cancer centers, and those provided by LLS
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Registration is Open!

IWMF Global Educational Webinar

An Overview of Amyloidosis and WM with Dr. Morie Gertz

Tuesday, March 29th, 2022

12:30PM – 1:30PM U.S. Eastern Time

SPEAKERS:

 

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About the presentation:

This program will inform participants about the cause, signs/symptoms, diagnosis, and treatment of amyloidosis.

About the speakers:
You can learn more about our speakers by clicking here.

SUPPORT

WMUK Webinar
Physio for Peripheral Neuropathy
Thursday, March 3rd at 6:00PM GMT

2021 WMUK Patient-Doctor Summit

WMUK will be joined by Dr. Gita Ramdharry, a Consultant Allied Health Professional in Neuromuscular Diseases and researcher at UCL Institute of Neurology, to discuss living with Peripheral Neuropathy (PN). She will be offering guidance from a physiotherapist’s standpoint on coping and living better with PN.

If you have any questions for Dr Ramdharry, please submit them to WMUK in advance by emailing support@wmuk.org.uk

*Please note the Greenwich Mean Time (GMT) time zone

Stressed? Try Bee’s Breath for Calm Immunity!

Breath

From our WM Yoga Instructor, Ann MacMullan:

Bee’s Breath can help calm the nervous system with its lengthened exhalations, and even support immune system health in a very special way. Like the droning of a bee, we create a humming sound on the exhalation with the mouth closed, which in turn oscillates the molecule Nitric Oxide in the para-sinuses– a naturally beneficial antiviral gas – distributing it to the respiratory system when we inhale with the mouth closed. You can literally hum your way to health!

Our WM Yoga classes meet on Mondays at 2:00PM U.S. ET. TO join the mailing list, contact Michelle at mpostek@iwmf.com .

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Thanks to You!

The IWMF is able to offer our education, information and support programs free of charge, thanks to the generosity of WM community members like you.
Please consider a gift of support by clicking below.

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