September: Dates of Significance

In September, we acknowledge International Pain Awareness Month, Chiari Malformation Awareness Month, Ganesh Chaturthi, Duchenne Muscular Dystrophy Awareness Day, Worldwide Cystic Fibrosis Day, Fetal Alcohol Syndrome Day, World Suicide Prevention Day, International Myotonic Dystrophy Awareness Day, World Lymphoma Day, World Patient Safety Day, World Chronic Myeloid Leukemia Day, and International Day of Sign Languages. Below, read more about each date of significance, written by members of our Inclusivity, Diversity, Equity and Accessibility (IDEA) Committee.

International Pain Awareness Month

September is International Pain Awareness Month. This month is dedicated to raising awareness and understanding pain. We know that many adults and children alike experience chronic pain due to their varying diagnoses. Pain management is an essential factor that can determine a person’s quality of life. Some of our Grandview Kids families share how pain impacts their family’s daily living and the different ways they help to manage their brave children’s pain.

“Cerebral palsy causes my child lifelong pain due to the spasticity in his muscles. To manage his pain and ease the tightness in his legs, we do daily stretches taught by our physiotherapist, use knee-immobilizers while in long-legged sitting and administer over-the-counter pain medication, such as acetaminophen when necessary. We also attend Grandview Kids’ Botox Clinic every 4-6 months to receive Botox shots that are quite painful at the moment but create huge but temporary relief. As a parent, I would switch places to take the pain away from my child, but I am also very proud of my child’s resiliency and strength.”

“There were times I felt helpless and frustrated, unable to take away my child’s pain. I prayed to God, asking to let me bear his pain and free him from it. In those moments, I realized just how deeply I loved my child.”

“Due to our child’s kidney issues, we have to limit the use of pain medication. This led us to explore alternative treatments, including homeopathy, oils, chiropractic care, and many prayers. These approaches have made a difference in managing his pain levels.”

“I have broken down in tears, seeing my son in unbearable pain. Despite his own suffering, he saw my helplessness and reassured me that he was feeling better, even pretending his pain wasn’t as severe to keep me from being upset. To me, he is a true hero.”

“For families just beginning their journey with pain, I want to say: take it one day at a time and explore as many alternatives as possible to manage pain. Talk to others, learn what has worked for them, and draw strength from their experiences as parents. Never overlook when your child says they are in pain—listen closely and respond with love. Sometimes, the smallest gestures, like singing a song or reading a book, can work like magic to divert their attention from constant discomfort. Above all, never lose hope, and know that your presence alone is a source of immense comfort to your child.”

“Living with pain in our family, especially after our daughter’s recent hip surgery, has been quite challenging. We face each day as it comes, trying our best to manage her discomfort. Some days are particularly tough, even though we exhaust all efforts to ease her pain. We navigate this difficult time by seeking help whenever possible and supporting each other as best as we can.

For families just beginning their journey with pain, remember to do everything you can to manage the situation, but don’t feel guilty on the days when it feels like nothing is working. It’s important to take breaks when you can, as self-care is crucial. You are doing your best, and that’s what truly matters.”

Chiari Malformation Awareness Month

Chiari malformation is a condition where part of the cerebellum extends into the spinal canal, which can pressure the brainstem and spinal cord. There are four types, with Type I being the most common, causing symptoms like headaches, neck pain, dizziness, and balance problems. Types II and III are more severe and often diagnosed in infancy, leading to significant neurological issues. Diagnosis is usually done with MRI scans. Treatment varies depending on the severity, ranging from monitoring and pain management to surgery to relieve pressure on the brain and spinal cord. Early detection and treatment are crucial for managing symptoms and preventing complications. September is Chiari Malformation Awareness Month, a time dedicated to raising awareness about this condition and supporting those affected.

Sept 6: Ganesh Chaturthi

Ganesh Chaturthi is a Hindu celebration that honours the birth of Lord Ganesh, the god of wisdom and prosperity. This celebration is being observed as a 10-day festival starting on September 6, 2024. During this time, idols of Ganesh are offered food and anointed. Observers will chant vedic hymns, give prayers and fast. Lord Ganesh is known as the remover of obstacles and is often seen to bring good fortune, prosperity and success to his devotees. We would like to take this time to wish any staff celebrating a happy Ganesh Chaturthi!

Sept 7: Duchenne Muscular Dystrophy Awareness Day

Duchenne Muscular Dystrophy (DMD) is a rare progressive disorder. People with DMD are missing muscle-protecting proteins. This is due to a fault in the gene-producing dystrophin. Muscles become weaker over time until the disease affects the whole body. It is caused by a mutation on the X-chromosome, which is why mainly males are affected.

First, walking becomes difficult, and then other motor functions follow. Ultimately, it affects the ability to breathe and the function of the heart, as the heart is also a muscle. The missing protein also functions in the brain, so learning and behaviour issues can also be part of the disease.

In most countries, the average age of diagnosis of DMD is above four years of age, and the diagnostic delay is around 2.5 years. Parents see symptoms much earlier, and some symptoms are already visible when the children are very young.

Duchenne Muscular Dystrophy is named after Dr. Duchenne de Boulogne, one of the first to report the disease in detail in the 1860s.

This year’s World Duchenne Awareness Day theme emphasizes the importance of amplifying voices to advocate for the rights, inclusion and well-being of people living with Duchenne muscular dystrophy (DMD) and other dystrophinopathies. We invite everyone, irrespective of their personal connection to Duchenne, to join in creating a more inclusive world where people living with disabilities are empowered to thrive. #WorldDuchenneAwarenessDay.

Sept 8: Worldwide Cystic Fibrosis Day 

Cystic fibrosis (CF) is the most common fatal genetic disease affecting more than 4,300 Canadian children, adolescents, and young adults. Half of the Canadians who died with CF in the past five years were under the age of 37. Unfortunately, there is no current cure.  

CF affects many systems in the body but mainly affects the digestive system and lungs.  

Typical symptoms and complications caused by cystic fibrosis are: 

• Persistent cough with productive thick mucous 
• Wheezing and shortness of breath 
• Weight loss or failure to gain weight despite possible increased appetite 
• Difficulty digesting fats and proteins 
• Malnutrition and vitamin deficiencies because of the inability to absorb nutrients 
• Progressive lung damage from chronic infections and inflammation 
• CF-related diabetes 
• Sinus infections 

For more information, please visit www.cysticfibrosis.ca/about-cf

Sept 9: Fetal Alcohol Syndrome Day

Fetal Alcohol Syndrome Day is observed every year on September 9 to raise awareness about Fetal Alcohol Spectrum Disorders (FASD). First recognized in 1999, the date 9/9 symbolizes the nine months of pregnancy, during which women must abstain from alcohol to protect their developing fetus from harm. Fetal Alcohol Spectrum Disorder (FASD) refers to a range of lifelong effects on the brain and body caused by prenatal exposure to alcohol.

Individuals with FASD may face challenges in various aspects of their daily lives, including motor skills, physical health, learning, memory, attention, communication, emotional regulation, and social skills. Despite these challenges, every individual with FASD has unique strengths and can reach their full potential with the proper support. FASD is a lifelong condition, but with increased awareness and understanding, we can better support those affected and work towards preventing future cases. Today, we encourage everyone to learn more about FASD, share this vital message, and support individuals and families impacted by this disorder.

Learn more about the impact of alcohol:

• Living with Fetal Alcohol Syndrome (YouTube)
• What Can Alcohol Do To A Fetus? (YouTube)

Sept 10: World Suicide Prevention Day

World Suicide Prevention Day, held every year on September 10, is a global effort to raise awareness about the critical issue of suicide and to promote actions that can help prevent it. This day is a call to action for individuals, communities and organizations to come together in support of those who may be struggling with suicidal thoughts or mental health challenges. It emphasizes the importance of understanding, compassion and open dialogue in breaking down the stigma that often surrounds mental illness.

Through educational campaigns, supportive networks and accessible resources, World Suicide Prevention Day seeks to create a world where everyone feels heard, valued and connected, reducing the tragic loss of life and offering hope to those in need. By fostering a culture of empathy and care, we can work towards a future where suicide is no longer seen as the only option.

Sept 15: International Myotonic Dystrophy Awareness Day

Myotonic dystrophy (DM) is a form of muscular dystrophy that affects muscles and other organs in the body. “Myotonia” is defined as the inability to relax muscles at will. “Muscular dystrophy” is defined as progressive muscle degeneration, with weakness and shrinkage of the muscle tissue. International Myotonic Dystrophy Awareness Day aims to bring awareness to the broader public and anyone interested in changing the future of myotonic dystrophy.

Raising awareness of myotonic dystrophy will help improve service provision, basic research, drug development, and policymaking related to the disease. Wear green on September 15 to raise awareness!

Sept 15: World Lymphoma Awareness Day

On Sunday, September 15, it is the 20th anniversary of World Lymphoma Day. The theme of this year focuses on the emotional effects of living with Lymphoma. A yearly trend that comes out of the Global Patient Survey on Lymphoma shows that most patients and caregivers experience emotional effects during their diagnosis, including anxiety, depression and fear of cancer progression.

Having honest conversations can help. Creating a link between caregivers and patients, as well as their healthcare teams, can help foster an understanding and support blanket for those affected.

Sept 17: World Patient Safety Day

World Patient Safety Day, observed annually on September 17, is a significant occasion to reaffirm our commitment to patient and client safety. This year, we are joining hands with healthcare professionals around the world to raise awareness about the importance of patient safety and to promote open dialogue on this critical issue.

At Grandview Kids, our focus is on fostering a culture of transparency and accountability in client care. Together, let’s continue to ensure that every client receives safe and effective care and strive to continuously improve our services for the well-being of all. 

Thank you to all who contribute to the many programs and services available to our families.  We all play a very important role in our clients’ and families’ experiences, and doing so safely is a significant priority.

Sept 23: World Chronic Myeloid Leukemia Day 

World Chronic Myeloid Leukemia (CML) Day is on September 22 each year. It’s a special day to learn about and raise awareness for chronic myeloid leukemia, a type of cancer that affects the blood and bone marrow. People with CML have too many white blood cells, which can make them very sick. This day is important because it helps us understand CML and how it impacts those with it.

To help today, you can start by learning about CML and sharing what you know with friends and family. Another great way to support is by donating to organizations that are working hard to find better treatments and cures. Your efforts can make a big difference for people living with CML and help improve their lives.

Sept 23: International Day of Sign Languages

We recognize International Day of Sign Languages (IDSL) annually on September 23 with the goal of celebrating and encouraging the use of sign languages. The date chosen for IDSL falls during International Week of the Deaf and commemorates when The World Federation of the Deaf (WFD) was founded in 1951. WFD is a global movement to raise awareness of the issues Deaf people face in their everyday lives.  Sign language is a valuable means of communicating across different languages and cultures and is not limited in use by the Deaf community. Many individuals in our Grandview Kids community, including parents with their babies/toddlers and non-verbal children, learn American Sign Language as an alternative and/or bridge to verbal communication.