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Latest Issue
Read the latest issue of our newsletter for the Gaucher community. It includes helpful news and information on important health issues, the latest research, The Gaucher Registry, insurance, patient stories and more.


October, 2014

Telling new people about a medical condition like Gaucher isn’t always easy—but it’s important in many situations. Deciding who to tell, and when, is a personal decision that only you can make. In the October issue we discuss strategies for approaching and handling the subject so you can be better prepared for the important conversations in your life, with a new partner or colleagues and teachers.

July, 2014

In the July issue we discuss the importance of setting personal goals in order to stay motivated and get the most out of your treatments. We also check in with Elizabeth to hear how setting goals helps her stay in control of her Gaucher.

June, 2014

In the June issue we talk with Sarah, who’s facing new Gaucher-related challenges as her teenager transitions from childhood. We also look at a great resource for connection and support, the MyNormal.ca website featured in the full-length article “Redefining Normal” currently available on the Gaucher Connection website.

May, 2014

If you ever experienced bone pain or other skeletal symptoms of Gaucher disease, you know what a serious effect they can have on your ability to stay active and live life to the fullest. In the May issue we take a closer look at exactly how and why with a review of the science behind the symptoms, and check in with Joseph to hear how regular treatments have allowed him and his family to lead an active and rewarding life.

March, 2014

Whether your treatment schedule runs smoothly or you sometimes experience challenges, it never hurts to consider what’s around the corner—so you can make sure to always stay consistent. In the March issue we look at how to anticipate challenges that could get in the way of getting consistent treatment, and check in with Julia to see how she fits treatments into her busy life as a teacher and mom.

February, 2014

In the January issue we look at a brand new website that reaches out to children with rare diseases. The MyNormal.ca website offers a place for children and adults to share their own stories and experiences about living with a rare condition. Plus, we check in with Cody, a 9 year old boy who’s growing up in the Gaucher community.

January, 2014

To get the most from your treatment, it’s important to stick to your infusion schedule. But you should also talk to your doctor about setting treatment goals and monitoring your progress. In the December issue we look at setting those goals, and seven tests that can help you reach them. Plus, we check in with Cody, a 9 year old boy who’s been receiving treatment for most of his life.

November, 2013

The Gaucher community is filled with people who have their own inspiring and interesting experiences. In the November issue we talk about the newsletter itself! Learn what it is, how it can help answer your questions, where you can find past issues, and even how you or someone you know could be a featured in a future issue. Plus, we check in with Cody to see how growing up in the Gaucher Community has made a difference for both him, and his mother Anita.

October, 2013

Diagnosed with Gaucher disease when he was 18 months old, Cody started treatment shortly after, so he’s been receiving infusions for most of his life. In the October issue we get to know Cody, and find out the difference growing up as part of the Canadian Gaucher community has made for him, and his mother, Anita.

The Gaucher Connection | Printed Newsletter | Version 4

Meet Cody, a 9 year old from Calgary. Diagnosed with Gaucher disease at 18 months, Cody has grown up as part of the Canadian Gaucher community. The latest issue of the printable Gaucher Connection newsletter is available now.

August, 2013

Steady enzyme replacement therapy is the number one way to keep Gaucher-affected bones strong—especially when supported by a healthy, “bone-friendly” lifestyle. In the August issue we look at healthy habits that help your bones get the most out of your treatment, so you can get the most out of life. Plus, we check in with Patrick to see how he combines a busy lifestyle with regular treatments, for bone health on the go.

July, 2013

Staying on top of your Gaucher means getting regular infusions as well as tests to measure your blood counts, liver and spleen size, and bone health. But numbers and figures don’t tell the whole story – your personal input is just as important. In the July issue we look at easy ways you can monitor yourself to help manage your health more effectively. Plus, we check in with Joseph to see how keeping track helps him stay on top of his Gaucher – and his daughter’s.

May, 2013

When you’re feeling healthy, it can be easy to forget that Gaucher disease is a lifelong condition. Day-to-day life, from the little details, to the big events, has a way of taking over and pushing treatment priorities aside. In the May issue we look at how Gaucher — a progressive disease — affects your body, and check in with Julia to see how being committed to treatment has made a difference for her life.

December, 2012

Whether your treatment schedule runs smoothly or you sometimes experience challenges, it never hurts to consider what’s around the corner—so you can make sure to always stay consistent. In the December issue we look at thinking and planning ahead for factors that could get in the way of treatment. Plus we check in with Mark to see how he stays motivated and in control of his Gaucher.

November, 2012

Puzzled by some of the scientific terms for the tests used to monitor Gaucher disease? In the November issue we walk through exactly what these terms mean, and what each test does. Plus we check in with Sarah to see how she stays supportive of her teenage son, who is living with Gaucher.

October, 2012

While steady enzyme replacement therapy is the number one way to keep Gaucher-affected bones strong, healthy habits can help your bones get the most out of your treatment. In the October issue we discuss how to safeguard the skeleton by creating a healthy, “bone-friendly” lifestyle, and find out how planning allows Michael to fit regular treatment for his Gaucher into his busy global travel schedule.

August, 2012

While clinical tests are critical for monitoring Gaucher disease, there’s also plenty people can do themselves to participate more actively in managing their health. In the July issue we discuss pro-active ways to get the most out of treatment in between treatments, and find out how Michael makes speaking about his Gaucher easier.

June, 2012

Healthy living promotes overall wellness, which helps lay a strong foundation for getting the most out of your treatment. In the June issue we discuss the importance of developing healthy habits, getting your doctor’s advice first for medical concerns, and taking care of your emotional wellbeing.

May, 2012

Nothing’s better than feeling healthy enough not to worry about Gaucher disease. But it’s still important to stay aware of signs that might need to be checked by a health care provider. In the May issue we discuss the importance of personalizing therapy, knowing the signs and tracking the symptoms.

April, 2012

In the April issue we speak with Diana Bolano Del Vecchio, the nurse co-ordinator for the Quebec Gaucher Program to find out what’s behind the symptoms associated with Gaucher. Plus, meet Linda, an active mother and grandmother who pushes her luck managing her Gaucher around another major chronic illness to make it work and stay as active as she can be.

March, 2012

In the March issue we discuss the importance of knowing the signs and tracking the symptoms of your Gaucher, in order to maintain up to date treatment and good health. Plus, meet Linda, an active mother and grandmother who pushes her luck managing her Gaucher around another major chronic illness to make it work and stay as active as she can be.

February, 2012

In the February issue we bring you coverage of The National Gaucher Foundation of Canada’s 2011 Congress, held last October, reporting on the objective, agenda, attendance, and future plans. Plus, meet Linda, an active mother and grandmother who pushes her luck managing her Gaucher around another major chronic illness to make it work and stay as active as she can be.

The Gaucher Connection | Printed Newsletter | Version 3

Learn about the importance of tracking the symptoms of Gaucher in order to maintain good health, and meet Linda, an active grandmother who manages two chronic illnesses. The latest issue of the printable Gaucher Connection newsletter is available now.

December, 2011

RegistryNXT! Is the name of the newly updated Sanofi Genzyme-sponsored lysosomal storage disorder registry system. The December issue features a dialogue with a RegistryNXT! program manager at Sanofi Genzyme, answering questions about the new system, it’s features and benefits, and how to join the registry. Plus, meet Pierre Joly, an avid photographer with a passion for technology that has taken him to some of the most remote parts of northern Ontario, despite his Gaucher.

November, 2011

The demands of managing a chronic condition like Gaucher disease can make it challenging to find the time and energy to pursue a healthy lifestyle. In the November issue we highlight the healthy habits that can provide worthwhile physical and emotional benefits to assist you in living well, and staying well, and meet Pierre, an avid photographer who travels to remote locations for business and pleasure.

October, 2011

In the October issue Dr. Neil Weinreb outlines some of the most common manifestations of Gaucher disease, which usually occur in the blood, bone, spleen and liver. Plus, read about how Pierre manages his Gaucher around his twin passions of photography and technology – both of which frequently take him to remote locations.

September, 2011

While it’s great to feel so healthy that you don’t have to worry about your Gaucher, there are signs you need to be aware of that can mean you’re due for a check up. In the September issue we talk about how your body can change over time, and how to know the signs and track your symptoms to ensure you’re receiving the most personalized and current treatment to manage your Gaucher.

August, 2011

Think that managing your Gaucher means you have to give up travel? There are a couple of options available to help ensure you always get the treatment you need, wherever you are. In the August issue we talk with Michael about how he maintains his treatments despite a busy travel schedule. He says it just takes some planning.

July, 2011

Long distance travel can be exciting, but it also brings challenges - even more so for people living with Gaucher. In the July issue we talk about how to plan ahead for travel or a move to ensure you maintain your infusion schedule and stay healthy.

June, 2011

Becoming a teenager is already tough, and teens living with Gaucher can bring parents new challenges to face. Changes in attitude and behaviour are normal at this age. In the June issue we talk with Sarah about how she’s supporting her son Joshua as he manages his Gaucher while adapting to life as a teenager.

May, 2011

Sticking with your treatments can be difficult during big transitions in your life, such as moving, changing jobs or starting school. In the May issue we discuss how to ensure uninterrupted treatments are part of a smooth transition to your new location.

March, 2011

Available right across Canada, the Cerezyme® Home Infusion program is a system administered by Shoppers Drug Mart and supported by Sanofi Genzyme that supports patients in receiving their treatments in the privacy of their own home. In the March issue we discuss the costs and benefits to patients, as well as who can participate.

February, 2011

Coming this fall! The National Gaucher Foundation of Canada will hold its national meeting for patients, caregivers, family members and healthcare professionals in Ottawa in the fall of 2011. In the February issue we discuss the intentions of the meeting, as well as who can attend, and how more details will be made available closer to the date.

January, 2011

Good news! Your travel plans don’t have to interfere with receiving treatment for your Gaucher disease. In the January issue we discuss how we can help you to make the most out of traveling or living abroad by arranging for treatments in your destination country.

December, 2010

Healthy living in body and mind promotes wellness and can help lay a stronger foundation for getting the most out of treatment. In the December issue we discuss ways to strengthen your wellbeing by paying attention to your physical, medical and emotional health.

November, 2010

Telling new people about a medical condition like Gaucher isn’t always easy—but it’s important in many situations. Deciding who to tell, and when, is a personal decision that only you can make. In the November issue we discuss strategies for approaching and handling the subject so you can be better prepared for the important conversations in your life, with a new partner or colleagues and teachers.

October, 2010

Many people living with Gaucher disease develop bone pain and other issues related to skeletal health. Ensuring you pay attention to any changes in your health—especially if you begin to experience bone pain—is key to maintaining bone health. In the October newsletter, we discuss the signs and symptoms you should be looking for and how maintaining regular assessments can help to manage these symptoms.

September, 2010

Making your child’s Gaucher treatments easier is something your whole family can help with. From establishing regular treatment patterns to including activities during infusions—and special treats on treatment days—you can help ease your child’s anxieties and help put them in control of their own treatment and health.

August, 2010

Staying organized is a challenge for just about everyone. Staying organized when your busy life includes treating your Gaucher can add extra challenges. In the August issue, we’ll show you how a little planning can help maintain order in your active life as well as keep you on track and on schedule with your treatments.

The Gaucher Connection | Printed Newsletter | Volume 2 Issue 1

Learn about Gaucher Connection tools, The Gaucher Registry and helpful questions to consider. The latest issue of the printable Gaucher Connection newsletter available now.

July, 2010

Learn about Gaucher Connection tools, The Gaucher Registry and helpful questions to consider. The latest issue of the printable Gaucher Connection newsletter available now.

June, 2010

Life is filled with change and transition. It’s part of the busy lives we all lead. Living with Gaucher disease can complicate transitions most people would take for granted. In the May issue, read how to deal with times of transition as a Gaucher patient and helpful, constructive ways to meet those challenges head on at home, work and school. We’ll help you design the groundwork so you can communicate more comfortably with co-workers, health care providers and even schools so you take the best possible care of yourself, your family and your Gaucher.

March, 2010

While clinical tests are critical for monitoring Gaucher disease, your personal input can be just as important. There’s plenty that people can do themselves to participate more actively in managing their health. In March’s issue read more about how you can get involved in monitoring your status and communicating with health care providers.

January, 2010

Knowing what to expect from treatment—what improvements and numbers to watch for—can help someone with Gaucher disease better manage their health. In January’s issue read more about therapeutic goals – both standard and individualized ones, what to aim for, and different ways you can help your health care team ensure your treatment is meeting your goals.

The Gaucher Connection | Printed Newsletter | Volume 1 Issue 2

The second issue of our printed newsletter is now available for download. Read about the benefits of the Gaucher Registry, Q&A on how to obtain insurance with Gaucher, a new patient profile and more.

December, 2009

Much of what we know today about how Gaucher disease affects people—and how treatment affects the disease—comes from analyzing data in the Gaucher Registry. In December’s issue read more about the registry and how to get involved so you (and others) can enjoy the many benefits the registry provides for patients and caregivers.

The Gaucher Connection | Printed Newsletter | Volume 1 Issue 1

Read the latest issue of our printed newsletter, a semi-annual publication intended to provide information, inspiration and connections for people with Gaucher disease, their families and their health care providers. This issue covers topics such as the psychological complications associated with a chronic illness, annual tests for better disease management and more.

November, 2009

Nothing’s better than feeling healthy enough not to worry about Gaucher disease. But it’s important to stay aware of signs that might need to be checked by a health care provider. This is particularly important during this temporary period of PrCerezyme® supply shortage.
In November’s issue read more about staying aware of symptoms, personalizing therapy, knowing the signs and taking action.

October 2009

Telling new people about a medical condition like Gaucher isn’t always easy—but it’s important in many situations. In October’s issue read more about conversations with your partner, colleagues and Teachers.

September 2009

This month’s issue discusses how to step back from the numbers and figures of your therapeutic goals and reflect on your success and hopes in a more personal way.

August 2009

Read the August issue which discusses knowing what to expect from your treatment and goals.

July 2009

In our July issue read about explaining your disease to the people in your life, a new patient story and the latest updates to the Gaucher Site.

June 2009

In our first issue, read about living with a progressive disease, keeping it all in balance and managing Gaucher Disease.