The Sickle Cell Disease Association of Canada
34- 260 Adelaide St. E M5A 1N1 Toronto, ON, Canada

Chère communauté, Alors qu'une nouvelle année s'achève, j'entends souvent "quelle année cela a été!" Quel euphémisme! Je ne peux m'empêcher de jeter un regard sur les neuf derniers mois où les défis se sont succédés. Malgré tout, nos médias sociaux n'ont pas reporté que nous avons perdu un seul membre de notre communauté à cause du virus Covid19. J'espère que c'est vrai et si c'est le cas, rien que pour cela, je suis reconnaissante....Continue reading

Dear community, As another year comes to an end, I often hear what a year this has been! What an understatement! I cannot help but look back at the last nine months as the challenges dropped in our laps, one after the other. Despite everything, our social media has not reported that we have lost any of our community members to the C19 virus. I hope this is true and if so, for that alone, I am grateful....Continue reading

The Sickle Cell Association of Ontario and Camp Jumoke would like to cordially invite you and your family to the annual Sickle Cell community holiday party, which this year has gone virtual due to COVID-19. An afternoon of FUN for the whole FAMILY! Join us on Saturday December 19th from 3:30 PM until 5:30 PM via Zoom for:... Holiday Cookie Baking Tik Tok Dance Challenges. Holiday Games and Prizes. A VERY Special Visit from KENTE CLAUS! Musical cheer provided by Perfect Storm Sound. Register before Tuesday December 15th in order to receive your holiday baking supplies. PRIZES and GIFT cards will be sent to ATTENDEES ONLY. So we recommend marking the date and don't be late. **SPECIAL ATTENDANCE PRIZES** The Sickle Cell Disease Association of Canada (SCDAC) has graciously donated two (2) prize packs for 2 very lucky guests who will be selected at random, just for joining the festivities. Another great reason to show up! This joyous occasion is open to children, their siblings and families living with Sickle Cell Disease here in Canada. We look forward to seeing all of our amazing community members and their families for this much needed time of joy, laughter, family, friends, fun and so much more! Register TODAY by going to http://bit.ly/SCDXmas2020.

When I first met Jewel at SCDAA Convention in Baltimore last year, the first thing that struck me was her smile. I saw her dancing. In a wheelchair. She was the most energetic person in the room. How could you not want to reach out to this person? How could you not want to know her?... She lived her belief that despite all the challenges that come with living with sickle cell, all the pain and all the hardships that she never gave up. She was a role model to me and to all in our community that you have to live the biggest life possible. Move ahead she said. Use your voice she said. You are enough. Just a few short weeks ago, on the 24th of November, she moved into her own place for the first time. She was posting about how expensive furniture was, how much things cost and how she was in her own place! To be living on her own! First time living on her own at the age of 32. She was so excited! Now, reading of her passing tonight, broke my heart. The entire community is grieving. I send my heartfelt condolences to her family, to the American sickle cell community, to the community at large. Jewel reached beyond the sickle cell community to empower all young girls, with her BoldPlus campaign. She advocated for people with mental health issues. She advocated with a bold, quiet, elegant grace. I sit and look at her photos, remember her strength, her fierceness and remember that sickle cell hurts. It kills. It robs us of our most valuable. It robbed us of Jewel. She lived up to her name and more. We love you. We miss you. Your legacy will live on. We will continue to fight. You remind us that we must. Biba Tinga President Sickle Cell Disease Association of Canada

Dear Community, It's happening now in Ontario! https://www.facebook.com/SickleCellON/videos/2727717037494194/

Another collaboration with the Global Alliance of Sickle Cell Disease Organizations! Join Us!

One of SCDAC/Pfizer 's research grants recipients finding is published in the British journal of Hematology! Today, we were very pleased to receive this note from Dr Yves Pastore, one of the co-investigators : On behalf of the research team led by Geneviève Maillhot, I would once again like to warmly thank SCDAC for the support it provided for this research. ... The quality of the project was underlined by its acceptance from the first submission in the prestigious journal of the British Journal of Hematology. Click here to read the article which is published this week online (ahead of print ) L'une des bénéficiaires de la bourse de recherche de AAFC/Pfizer est publiée dans la fameuse revue britannique, British Journal of Hematology! Aujourd'hui, nous avons été très heureux de recevoir cette note du Dr. Yves Pastore, l'un des co-chercheurs: Au nom de l’équipe de recherche dirigée par Geneviève Maillhot, j’aimerai à nouveau chaleureusement remercier SCDAC pour le soutien qu’elle a apporté à cette recherche. La qualité du projet a été soulignée par son acceptation dès la première soumission dans la prestigieuse revue du British Journal of Hematology. Cliquez ici pour lire cet article qui est publié en ligne cette semaine: https://pubmed.ncbi.nlm.nih.gov/33169863/

Bonjour à tous! Inscrivez vous pour vous joindre à cette importante discussion

Today is World Mental Health Day. A Sickle Cell patient deals with the worst physical and mental health issues. https://pm.gc.ca//statement-prime-minister-world-mental-he

Greetings Global Community! Are you a leader (or executive team member) of an organization (charity or a non-profit) dedicated to Sickle Cell Disease? Does your organization run a program or project related to Sickle Cell Disease? ... If you answered yes to either of these questions, then this webinar is for you! Join Global Alliance of Sickle Cell Disease Organizations (GASCDO) on Saturday, November 21st, 2020 at 10:00 AM EST (specify time in West Africa & Europe) for the first of our webinar series about how to get involved with GASCDO and how we can work together to improve the lives of people living with Sickle Cell Disease everywhere! This webinar will be an opportunity to learn how to become a GASCDO (voting or affiliate) member. Register today! https://bit.ly/2SKnxH6

SCDAC was at the NRBDO Conference. Yesterday, I shared our Sickle Cell journey in the wait for new therapies in Canada

SCDAC Sickle Cell Education Day is today, Saturday October 3rd from 11:00 AM until 6:00 PM (EST). Tune in at 3:00 PM (EST) for a conversation on HEALTH EQUITY featuring Dr. Ahmar U. Zaidi and Alvin Merchant as they discuss creating real equity for SCD patients here in Canada and around the world. All moderated by SCDAC President Biba Tinga. Join them on Zoom, Facebook Live and Instagram Live via either our social media accounts or the SCDAC.... ZOOM Webinar Info: Webinar ID: 856 2752 3136 Passcode: 905793 We look forward to your participation and feedback

Staring soon, at 1pmEST Conversation with Dr. Marjorie Dejoie she is the owner of MAD Fit, a medical consulting and Wellness & Health business and a Medical Consultant for the National Sickle Cell Disease Association of America. at 1 pm EST.... She will share her journey with us Tuned in for another great conversation with one of our Heroes Sheroes! Join us on Zoom Webinar: : 87952651462 Passcode: 611990

Starting soon... Conversation with Lady Anne Welsh at 11 am EST. She will share how she turned physical, mental and emotional pain into a purpose.... Join us on Zoom Webinar 875 8134 5810 Passcode 11 42 57

Lady Anne Welsh will be back to Canada for SCDAC. Do not miss this session at 11 am EST on Saturday, October 3rd. ANNE WELSH is the Founder and President of Painless Universal. Painless Universal is on a mission to end the Pain epidemic caused by mental, physical and emotional pain. Our focus is to get people, communities and countries back working again. When you are in pain it is just not you that suffers but everyone one around you also suffers. ... Anne comes from an investment banking and consultancy background that has allowed her to connect with many people and cultures around the world, seeing first hand how pain causes disruption in so many lives, organisations and countries. Ms. Welsh is also the author of Pain-Less, which is a memoir and self help book centred around her life experiences as a sickle cell sufferer and how she has taken on the physical and mental challenges associated with the disease. She remains an advocate for sickle cell and has received numerous awards and recognition for this community service in the United Kingdom and around the world.

She is a Medical Doctor and a peer living with Sickle Cell Disease. Two different lives, one person. Join us for this important session. Dr. Marjorie Dejoie is the owner of MAD Fit, a medical consulting and Wellness & Health business and a Medical Consultant for the National Sickle Cell Disease Association of America. She most recently held the position of Patient engagement Lead in rare Disease for Pfizer and Clinical Research Outreach Liaison for Hydroxyurea and Transition ...at the Children’s Hospital of Philadelphia. Her groundbreaking work as a primary medical consultant for the Mayor’s Fun, Fit, and Free program, a key part of the Mayor’s Commission for Health, Fitness and inclusion, allowed her to apply her training in medicine, exercise physiology, and alternative medicine in an integrative, community based, preventative format with the primary goal of making Philadelphia a healthier city. From there, she molded a career in Functional Medicine, which utilizes a fusion of the principles of medicine, prescribed exercise, bio-psychosocial elements, stress reduction, nutrition and alternative medicine in the holistic treatment and care of patients and clients. Herself a patient of Sickle Cell Disease (SCD), Dr. Dejoie is a firm proponent and practitioner of comprehensive and preventative health and wellness planning. This became the mission behind her consulting firm M.A.D. fit" established in 2002. Building on this foundation, Dr. Dejoie opened a wellness center, Bonne Santé in the fall of 2003, dedicating herself to making this world a better place by making it healthier, one person at a time. Dr. Dejoie’s research interests include best practice models to enhance the health care, treatment protocol, and quality of life for individuals who suffer from chronic illnesses with an emphasis on sickle cell disease. Specific areas of focus include SCD as a public health initiative, patient advocacy, the use of prescribed exercise in treatment of multiple disease processes and comprehensive health equity for everyone.

Join us to hear from Storma Mcdonald is the president of the Sickle Cell Association of BC. She is an herbalist specializing in probiotics / fermentology and education on the creation of foods and cultures for the healing and the development of the immune system and micorbiome. Currently she is continuing her studies in complementary medicine / nutrition, mycology and hypnosis, and is writing books and articles on the treatment of sickle cell disease using complementary medicine that patients can safely use in addition to their regular medication protocols with the help of their health care providers.

Join Us, tomorrow October 3rd. Log in information are on the flyer. Meet our speakers :...Continue reading

For natural tips on your to manage Sickle Cell symptoms, join us for this session with Storma McDonald. She is the president of the Sickle Cell Association of British Columbia, SCBC and is an herbalist specializing in probiotics / fermentology and education on the creation of foods, cultures for the healing and the development of the immune system and micorbiome. Currently she is continuing her studies in complementary medicine / nutrition, mycology and hypnosis, and is writing books and articles on the treatment of sickle cell disease using complementary medicine that patients can safely use in addition to their regular medication protocols with the help of their health care providers.

On October 3rd, we are pleased to present Dr Marjorie Dejoie. A peer living with Sickle Cell Disease and a Medical Doctor, she has a unique understanding of life with Sickle Cell Disease. This session will bring valuable insights and teachings. Mark your calendars.... Dr. Marjorie Dejoie is the owner of MAD Fit, a medical consulting and Wellness & Health business and a Medical Consultant for the National Sickle Cell Disease Association of America. She most recently held the position of Patient engagement Lead in rare Disease for Pfizer and Clinical Research Outreach Liaison for Hydroxyurea and Transition at the Children’s Hospital of Philadelphia. Her groundbreaking work as a primary medical consultant for the Mayor’s Fun, Fit, and Free program, a key part of the Mayor’s Commission for Health, Fitness and inclusion, allowed her to apply her training in medicine, exercise physiology, and alternative medicine in an integrative, community based, preventative format with the primary goal of making Philadelphia a healthier city. From there, she molded a career in Functional Medicine, which utilizes a fusion of the principles of medicine, prescribed exercise, bio-psychosocial elements, stress reduction, nutrition and alternative medicine in the holistic treatment and care of patients and clients. Herself a patient of Sickle Cell Disease (SCD), Dr. Dejoie is a firm proponent and practitioner of comprehensive and preventative health and wellness planning. This became the mission behind her consulting firm M.A.D. fit" established in 2002. Building on this foundation, Dr. Dejoie opened a wellness center, Bonne Santé in the fall of 2003, dedicating herself to making this world a better place by making it healthier, one person at a time. Dr. Dejoie’s research interests include best practice models to enhance the health care, treatment protocol, and quality of life for individuals who suffer from chronic illnesses with an emphasis on sickle cell disease. Specific areas of focus include SCD as a public health initiative, patient advocacy, the use of prescribed exercise in treatment of multiple disease processes and comprehensive health equity for everyone. Dr Dejoie, we look forward to having you in Canada

On October 3rd, on our 2020 Education Day, we invite you to meet a powerful patient/Advocate: ANNE WELSH is the Founder and President of Painless Universal. Painless Universal is on a mission to end the Pain epidemic caused by mental, physical and emotional pain. Our focus is to get people, communities and countries back working again. When you are in pain it is just not you that suffers but everyone one around you also suffers. Anne comes from an investment banking an...d consultancy background that has allowed her to connect with many people and cultures around the world, seeing first hand how pain causes disruption in so many lives, organisations and countries. Ms. Welsh is also the author of Pain-Less, which is a memior and self help book centred around her life experiences as a sickle cell sufferer and how she has taken on the physical and mental challenges associated with the disease. She remains an advocate for sickle cell and has received numerous awards and recognition for this community service in the United Kingdom and around the world. See flyer for log in information.

Sickle Cell Disease: Searching for Health Equity October 3rd at 3:00 PM EST (see flyer for log in information). Meet our panelists:...Continue reading

Dear Community, On October 3rd, SCDAC is bringing another Education Day. Mark your calendars, save the date and join us for our 2020 AGM (Oct 2nd) and Education Day. ... Join these sessions to hear from experts by experience (peers living with SCD) and by training ( medical professionals) discuss a wide range of topics. More information about each session will be shared shorly. See flyers for information on how to join each session. You do not want to miss our 2020 AGM & Education Day. #scdac

Starting soon!! Join Us on Zoom Webinar ID 851 4789 0107 Passcode: 835174... Or join by phone: US: +1 301 715 8592 or +1 312 626 6799 or +1 346 248 7799 or +1 669 900 6833 or +1 929 205 6099 or +1 253 215 8782 Canada: +1 438 809 7799 or +1 587 328 1099 or +1 647 374 4685 or +1 647 558 0588 or +1 778 907 2071 or +1 204 272 7920 Webinar ID: 851 4789 0107 Passcode: 835174 International numbers available: https://us02web.zoom.us/u/kvfmaB6FU