Joe Bodego, Author at Sickle Cell Awareness Group of Ontario

Dr. Laura Janzen

Dr. Laura Janzen is a board-certified clinical neuropsychologist (with a pediatric neuropsychology specialty) who practices at the Hospital for Sick Children in the Division of Hematology/Oncology. She has more than 15 years of experience in providing clinical neuropsychology assessment and consultation services to children/youth with sickle cell disease, as well as other neurological and developmental conditions. She actively works with families, school staff, and medical teams to ensure that her patients’ cognitive, academic, and emotional/behavioral needs are met. She carries out research on the neuropsychological effects of sickle cell disease, and the outcomes of interventions aimed at improving functioning. She has presented at various conferences locally and internationally, participated in numerous advocacy events, and engaged in community activities related to sickle cell disease

Taking Charge and Raising Awareness: Sickle Cell Disease in Teens

Taking Charge and Raising Awareness: Sickle Cell Disease in Teens Millions of people throughout the world are afflicted with the hereditary illness known as sickle cell disease (SCD). Despite its widespread prevalence, there is still a very low level of knowledge about it, especially among teens. Understanding Sickle Cell Disease Sickle cell disease is an inherited condition that alters the shape and functionality of red blood cells that affects more than 20 million individuals worldwide. Instead of being round and flexible, the red blood cells of individuals with SCD are shaped like crescent moons or sickles. This irregular shape makes it difficult for these cells to navigate through small blood vessels, leading to episodes of pain and damage to vital organs. Teens often face unique challenges as they navigate the transition from childhood to adulthood. They grapple not only with the typical issues of adolescence but also with the physical and emotional toll of managing a chronic illness. The Importance of Awareness Increasing awareness of Sickle Cell Disease is important to enhance the well-being of individuals impacted by this condition. Empowering teens with knowledge, including its origins, inheritance patterns, and physiological effects, equips them with the tools to take better control of their health. Informed individuals are better prepared to manage the challenges associated with SCD effectively. Taking Charge of SCD For teens living with sickle cell, taking charge of their health is fundamental. By embracing this responsibility, they can enhance their overall happiness and fulfillment. Education: Understanding the underlying causes and symptoms, helps young adults to be more proactive in recognizing any warning signs or triggers. Engaging in open discussions with their healthcare team allows them to actively participate in creating a personalized treatment plan that suits their personal needs and goals. Preparation: Teenagers should be well-prepared for emergencies, knowing when to seek immediate medical attention and how to manage pain or other symptoms during such situations. Developing a crisis plan with their caregivers can provide them with a sense of security and confidence in handling unexpected challenges. Exercise: Engaging in regular exercise helps improve cardiovascular health, strengthens muscles, and enhances overall well-being. Participating in appropriate physical activities also promotes a positive mindset and helps teens build resilience to face the challenges that come with the condition. Tip: Always speak with your healthcare professionals and know your limits. Nutrition: Proper nutrition and hydration are important components of managing SCD. A balanced diet rich in nutrients helps support overall health and can reduce the risk of complications. Staying well-hydrated helps to prevent the occurrence of painful vaso-occlusive crises and maintains adequate blood flow throughout the body. Building Supportive Communities Building supportive communities is essential for teens living with Sickle Cell Disease to thrive and lead fulfilling lives. Schools play a role in helping these teenagers. The special requirements and difficulties individuals with the condition meet need to be communicated to teachers and staff. This knowledge enables them to provide appropriate accommodations, such as allowing extra breaks, providing additional time for assignments or exams during times of crisis, or making provisions for missed school days due to medical appointments. Family members can be strong pillars of understanding, empathy, and love, helping navigate the complexities of the disease. Offering emotional reassurance during challenging times and celebrating successes, no matter how small, can positively impact overall wellbeing. Families can also work together to create a healthy and nurturing home environment, which includes supporting them in following their treatment regimen and efficiently maintaining their health. Community organizations devoted to supporting individuals affected by SCD play a pivotal role in building a network of resources and advocacy. They may create support groups or events that bring together teens, allowing them to connect with others who understand their experiences and challenges. Such connections can reduce feelings of isolation and provide a sense of belonging to a wider community. How teens can raise awareness Teens with SCD can play an active role in raising awareness about their condition to promote understanding, empathy, and support within their communities. Here are some examples of how they can do so:

Share Their Story: Teenagers can share their personal experiences by written narratives, videos, or public speaking. By sharing their journey, challenges, and triumphs, they can help others understand the realities of living with the condition and break down misconceptions.
Engage in School Presentations: With the support of their school and teachers, teens can give presentations about SCD to their peers. This helps create awareness, fostering a more supportive and understanding school environment.
Participate in Awareness Events: Actively participating in local and national events related to sickle cell disease helps draw attention to the condition and its impact on individuals and families.
Use Social Media: These platforms offer a powerful tool for advocacy and awareness. Youth can share information, stories, and resources on their social media accounts to reach a broader audience and engage with others who may be affected by the condition worldwide.
Create Educational Materials: Teenagers can work with companies and groups to develop SCD education materials that are appropriate for their peers' age range. Schools, community centers, and medical facilities may disseminate these items.
Start Support Groups: Teens can initiate support groups for individuals with SCD in their community. These groups can offer a safe space for sharing experiences, providing mutual support, and raising awareness collectively.
Partner with Local Organisations: Connecting with local support organizations or patient advocacy groups can offer teens valuable guidance and resources for their awareness initiatives.
Speak with Local Media: Teens can reach out to local newspapers, radio stations, or TV channels to share their experiences and educate the public. Media coverage can help reach a broader audience and generate more awareness.

Conclusion Raising awareness about sickle cell disease and empowering teens can transform lives. By working together, we can create a more inclusive and supportive society.

Summit Agenda

Speakers

Delaney Hines

Dr. Ewurabena Simpson – CHEO

Lembi Buchanan

Dr. Aditi Khandelwal

Dr. Aisha Bruce

Devan Sommerville

Dr. Andrea Cervi

Jaspreet Randhawa

Peola Ellis

Fairuz Karim

Senator Jane Cordy

Ika Washington 2023

Dr. Christine Lamontagne

Dr Kofi Anie MBE

Sudha Kutty

Dr. Laura Janzen

Mrs. Tunji-Ajayi – SCAGO

Karen Fleming – SCAGO

Dr. Jennifer Bryan – UHN

Sandra Newton

Dr. Sarah Patterson – Hamilton Health Sciences

Dr. Kevin Kuo – UHN

Dr. Robert Klaassen – CHEO/ University of Ottawa

Lance Archer – SCAGO

Dr. Oyedeji Ayorinde – Queen’s University

Sinthu Srikanthan – Toronto General Hospital

Dr. Jacob Pendergrast – UHN

Dr. Ziad Solh – LHSC

Call For Abstracts 2023

3rd Annual Sickle Cell Summit:
November 3rd and 4th, 2023
A virtual summit presented by the Sickle Cell Awareness Group of Ontario and partners from the Hospital for Sick Children, University Health Network, Hamilton Health Sciences, Queen’s University, University of Ottawa, and the Children’s Hospital of Eastern Ontario

What is the Sickle Cell Summit 2023?
The Sickle Cell Summit 2023 will be held virtually on November 3rd and 4th, 2023. The Summit offers an interactive and comprehensive agenda dedicated to improving the quality of life of individuals and families affected by sickle cell disease. It also provides opportunities for collaboration with the industry, policymakers, and multiple global stakeholders in the field of hematology.

Recordings from the 2022 Ontario Sickle Cell Summit are available through the Sickle Cell Awareness Group of Ontario here (https://sicklecellanemia.ca/summit-2022).

SUMMIT DELIVERY PLATFORM
The Sickle Cell Summit 2023 will be delivered online over a virtual platform.

PRESENTATION FORMATS
Abstracts will be accepted for presentations in the following formats:

Plenary Sessions
Plenary sessions are 60 minutes long and must address a topic relevant to summit delegates. A plenary session may involve a panel or a single presenter.

Tracked Speaker Sessions
Speaker sessions are 75 minutes long and provide perspectives on a topic relevant to summit delegates. Sessions can include a maximum of 4 experts, plus a moderator. A moderator for the session is to be identified in the abstract. Abstracts must indicate if identified panelists are proposed or confirmed. Preference will be given to abstracts with confirmed panelists. Panel abstracts with proposed panelists may be given provisional approval subject to the confirmation of all panelists.

Poster Presentation
A poster presentation can be a good way to present targeted research or significant work in progress. E-posters will be displayed in the e-poster gallery for the duration of the Summit.

WHO SHOULD SUBMIT AN ABSTRACT?
As a patient-focused conference, presentations are welcome from:
Healthcare providers, Clinicians, and Health Care Provider Associations
Researchers (from non-profit organizations, universities, and other settings)
People with lived SCD experience (patients, caregivers, and patient organizations)
Policymakers and Government Agencies
Authors must indicate their institution, organization, city, state, and country. Any conflict of interest and financial support of studies should be disclosed.

ABSTRACT GUIDELINES
Preference Will Be Given to Abstracts That:
Support the Summit theme
are relevant to the Summit audience
are submitted in English or French language
are of high quality (appropriate methodology, completeness of results, appropriate length of 250-300 words, appropriate wording) and are clear and easy to understand
are innovative or add to an existing body of knowledge
contains no more than 2 figures
includes a brief introduction, the aim of the study, methods, results, and conclusion
Have all presenters and moderators identified and confirmed

TOPIC AREAS:
Clinical Learning themes
Cannabis And Sickle Cell Care
Acute And Chronic Pain Management (Could Include Ketamine, Virtual Reality)
Advancing treatments and therapies for sickle cell disease on a global level
Transfusion Medicine In SCD
Pharmacotherapy And Sickle Cell Care
Advocacy For Healthcare Providers
Advocacy for Novel Therapies: What Health Care Providers Need to Know
Gene Therapy for SCD in Canada
Beyond Hydroxyurea: Other Emerging Therapies

Advocacy Learning themes
Depression, Anxiety, and the Neurodiversity of Sickle Cell Disease
Racism, health equity, and microaggressions
Role of Patient Organization
Non-pharmacological Pain Management
Navigating Relationships In SCD
Arts-Based Facilitated Learning
Workplace And School Supports
Employer Response to Sickle Cell (Accommodation/Labour Rights)/Disability Justice

Psycho-social Learning themes
Depression, Anxiety, and the Neurodiversity of Sickle Cell Disease
Care Transitions
Community SCD Resources
Racism, Health Equity, And Microaggressions
Social Workers As Partners And Advocates
Accessing Financial Supports (E.G., Disability Benefits, Medication Benefits, Dental Care, Physio)
Mental Health Intersectionality (Neurodiversity and Sickle Cell)
Patient – Finding Love
Patient – Self Management Tools and digital tools for self-care
Care Transitions
Family – Family Planning
Family – Caring For Yourself
Gene Editing and Other Curative Therapies in Sickle Cell Disease
Safe, Pheno-type matched Blood
Acute Chest Syndrome and Sickle Cell Disease
What is hot in Sickle Cell Disease
Priapism and sickle cell disease
Pregnancy and SCD

For more information, please contact: education@sicklecellanemia.ca Copy: educationchair@sicklecellanemia.ca

SUBMISSION FORM
Abstracts must be submitted online using the abstract submission form. The maximum length of an abstract is 300 words. We do not require a specific format for abstracts. However, the abstract text should be clear and easy to understand.

The abstract submission form includes fields for the following required information:

Title — one that clearly identifies your presentation
Submission contact — name, title, organization, contact information
Presentation format — submitted abstracts will only be considered for presentation in the selected format
Intended audience — who you want to reach with your presentation
Purpose or educational objective — what attendees will leave with
Presenters — names, titles, organizations, contact information, confirmed or proposed status; please provide a brief (65 words maximum) narrative biography and picture (JPEG format, minimum of 200 KB) for each presenter
Authors — names, titles, organizations, contact information; photos and biographies are not required for co-authors unless they are also presenting
Panel moderator, if applicable — name, title, organization, contact information
Speaker disclosure and conflict of interest.
This information does not count toward the 250-word abstract text total.’

SELECTION CRITERIA
All submissions received by July 31, 2023, will be reviewed by members of the Summit organizing committee. Successful submissions will be selected based on relevance to the topic themes, and perceived level of interest to the summit audience.

SPEAKER DECLARATIONS/CONFLICT OF INTEREST
Individual speaker declarations identifying all actual or potential conflicts of interest in relation to the program, topic, or presentation must be disclosed when submitting an abstract. For each speaker, either of the following is required:
a declaration that the speaker has no actual or potential conflict in relation to the program, topic, or presentation
a declaration of a competing interest or affiliation that could be perceived as having a bearing on the program, topic, or presentation; and a listing of all current competing interests or affiliations.

DEADLINE
Abstracts must be received by 11:00 p.m. on Thursday, August 31, 2023.

About Summit 2023

About the SCAGO Sickle Cell Summit 2023

The 3^rd annual Sickle Cell Awareness Group of Ontario (SCAGO) Sickle Cell Summit is a virtual convening of the Sickle Cell Disease Community aimed to bring together all members of the Sickle Cell disease community to:

Inspire those familiar and unfamiliar with the ever-changing landscape of Sickle Cell Disease (SCD) care to advocate for SCD
Empower members of the Sickle Cell Disease community to better understand how to advocate for emerging therapies
Further, advance inclusive and equitable SCD care
Foster interprofessional collaborations at a provincial/national/international level
Shape SCAGO’s focus areas and strategic direction

What to Expect: Over the course of two days, we aim to create an inclusive and engaging experience for participants, with multiple opportunities for knowledge translation and sharing of perspectives. There will be:

Plenary sessions with panelists including Political Officials, public health officials, researchers, health care providers, industry representatives, and other experts
Fostered connections with advocates at a provincial, national, and international level
Reports from SCD center on the status of their continuous improvement in SCD care
Safe spaces for health care providers, health system leaders, health policymakers, people living with Sickle Cell Disease, families, and caregivers the opportunity for discourse around current care practices
Identified opportunities for cross-discipline collaborations
Industry Partners Symposium with a panel of global leaders, clinicians, and industry partners from the inherited blood disorders community in a candid discussion

Expected Outcomes: At the conclusion of the Summit, members of our Sickle Cell Disease community in attendance will benefit from:

Fostered connections with stakeholders navigating the everchanging landscape of SCD Care
Improved visibility and profile of SCD care practices, therapies, and training opportunities available provincially, nationally, and internationally
Empowered patients, caregivers, and family members of those living with Sickle Cell Disease to advocate for the removal of barriers to equitable care
Opportunities to view an exhibition of research underway to respond to challenges with Sickle Cell Disease
Improved cohesiveness between patient advocacy groups, healthcare professionals, political officials, those living with SCD, family members, and caregivers
Improved understanding of the digital applications and tools available to promote continuous improvement of care delivery and self-management