Thank you for your support of the Ontario Rett Syndrome Association (O.R.S.A.) in 2016. It was a year of amazing accomplishments that could not have happened without your support.
In 2016, O.R.S.A. had several major accomplishments, all of which contribute towards an effort to ensure that children and adults with Rett syndrome are enabled to achieve their full potential and enjoy the highest quality of life within their community.
These include:
* Hosted the Rising Towards Tomorrow Conference in Ottawa with over 122 attendees traveling from 4 provinces to participate in the bi-annual educational event.
* Board of Directors has unanimously approved the funding of two $25,000 Research Grants from The Hope Fund in 2016. The first $25,000 grant was awarded to Dr. James Eubanks from Toronto Western Hospital with and the second $25,000 grant was awarded to Dr Mojgan Rastegar from the University of Manitoba.
* Board of Directors unanimously approved the largest research grant in the history of Canadian Rett Associations. We were very excited to announce that The Hope Fund will be releasing a $100,000 research grant in 2017.
* Coordinated Rett Syndrome Awareness Day in Canada on October 29. Buildings and homes across the country were lit purple for the night in solidarity.
* Continue to maintain and support the Canadian Rett Syndrome Registry. This registry is important to families across Canada as future drug trials for Rett syndrome can only be implemented in Canada through an approved registry.
* Continued to make annual financial contributions towards the three Rett Syndrome Clinics in Ontario in order for them to continue to support the individuals living with Rett syndrome.
None of these accomplishments would have been possible without the efforts the volunteer Board of Directors at O.R.S.A. and your continued partnership with us. We truly appreciate your love and support.
If you would like to make a year end donation by December 31, 2016, here are 2 ways for you to give:
1. MAIL- Please make cheques payable to Ontario Rett Syndrome Association and mail to (postmarked by 12/31/2014): P.O. Box 50030 London, ON N6A 6H8
2. ONLINE- Donate online at www.rett.ca
Thank you for your support!
Last Updated: 01/07/2017 by Sherry Lawrence
Thank you for your support of the Ontario Rett Syndrome Association (O.R.S.A.) in 2016. It was a year of amazing accomplishments that could not have happened without your support.
In 2016, O.R.S.A. had several major accomplishments, all of which contribute towards an effort to ensure that children and adults with Rett syndrome are enabled to achieve their full potential and enjoy the highest quality of life within their community.
These include:
* Hosted the Rising Towards Tomorrow Conference in Ottawa with over 122 attendees traveling from 4 provinces to participate in the bi-annual educational event.
* Board of Directors has unanimously approved the funding of two $25,000 Research Grants from The Hope Fund in 2016. The first $25,000 grant was awarded to Dr. James Eubanks from Toronto Western Hospital with and the second $25,000 grant was awarded to Dr Mojgan Rastegar from the University of Manitoba.
* Board of Directors unanimously approved the largest research grant in the history of Canadian Rett Associations. We were very excited to announce that The Hope Fund will be releasing a $100,000 research grant in 2017.
* Coordinated Rett Syndrome Awareness Day in Canada on October 29. Buildings and homes across the country were lit purple for the night in solidarity.
* Continue to maintain and support the Canadian Rett Syndrome Registry. This registry is important to families across Canada as future drug trials for Rett syndrome can only be implemented in Canada through an approved registry.
* Continued to make annual financial contributions towards the three Rett Syndrome Clinics in Ontario in order for them to continue to support the individuals living with Rett syndrome.
None of these accomplishments would have been possible without the efforts the volunteer Board of Directors at O.R.S.A. and your continued partnership with us. We truly appreciate your love and support.
If you would like to make a year end donation by December 31, 2016, here are 2 ways for you to give:
1. MAIL- Please make cheques payable to Ontario Rett Syndrome Association and mail to (postmarked by 12/31/2014): P.O. Box 50030 London, ON N6A 6H8
2. ONLINE- Donate online at www.rett.ca
Welcome Bryan Higgins, O.R.S.A. Board
Last Updated: 10/23/2016 by Sherry Lawrence
At our Annual General Meeting in August we elected a new member to our Board of Directors. Please join us in welcoming Bryan Higgins!
Bryan is the parent of a young girl with Rett syndrome and he has become quite involved, learning about communication, literacy and eye-gaze technology to help his daughter. Bryan brings with him several years of experience in internet technology, software development and social media. Bryan wants to be become involved to help others families and we welcome his energy, skills and enthusiasm!
Terry Boyd Retires
Last Updated: 11/21/2016 by Sherry Lawrence
Dear Friends and Members,
At the annual general meeting for the Ontario Rett Syndrome Association on August 19th, I will retire as president after 25 years serving on the board of directors. I would like to take the opportunity to express my sincere appreciation and to share a few final thoughts.
On November 9th, 1989 my husband, Dean and I heard those horrific words “Your daughter has Rett syndrome”. Like many parents at that time, we had never heard of this devastating rare disorder. There were only a few articles published on Rett syndrome in 1989. There was no internet to research it or to connect with other families. I did reach out to the Canadian Rett Syndrome Association by phone quite quickly. Two months after Kayleigh’s diagnosis, I was invited to attend a meeting with three other moms from Eastern Ontario and the executive director from the Canadian Rett Syndrome Association (CRSA). At this meeting, a local Ottawa/Cornwall Chapter was developed and somehow I became president. As a chapter president, I automatically became a board member for CRSA. I quickly met other parents from across Canada and Ontario who were board members. Within the first year on the board, it became evident that an Ontario Rett Syndrome Association was needed so provincial goals could be addressed. I was proud to be a part of the group that created the Ontario Rett Syndrome Association twenty-five years ago. In 1994, with great sadness, the Canadian Rett Syndrome Association was dissolved. The cost of operating a federal association for a rare disease was truly impossible. Each provincial association agreed to work together even if CRSA had to fold. To continue the provincial work, O.R.S.A. grew stronger and evolved at a rapid pace. I have been privilege to be a participant in this growth. My role on the board of O.R.S.A. in the early years was to operate the resource centre from my home and to be the support to families.
Through the past 26 years, I have had the pleasure of speaking to and meeting hundreds of families from across Canada. It has been an honour to be the first point of contact for many parents who had a child newly diagnosed with Rett syndrome. I have watched families grow stronger and rise up to the challenge to support and care for their family member with Rett syndrome. I have also shared in the deepest of sadness when a child with Rett syndrome has passed away. Each time I received the difficult phone call from the parents, my heart broke a little more. It is by meeting all of these families, I have found my own strength. Thank you to every family for allowing me to be a part of their lives. You and your children have been an inspiration.
Words can never express the gratitude I have for the researchers, physicians and medical professionals that I have gotten to know and have worked with over the years. There is no doubt these are a special group of individuals. They go beyond what is required of them. Their dedication to our children and to O.R.S.A. is unique and is absolutely appreciated. I am honoured to call many of them a colleague and a friend. I have to give a special thank you to Dr. Patrick MacLeod and Dr. Peter Humphreys. Dr. MacLeod has been a guiding force for O.R.S.A. He has also been the doctor who gave Dean and I hope when Kayleigh was diagnosed with Rett syndrome. His calm devotion and caring nature made us know our daughter was in safe hands. I will forever be grateful for his friendship and guidance. Dr. Humphreys became Kayleigh’s neurologist many years ago. He patiently listened to my continued request that he develop a Rett syndrome clinic in Ottawa. When it was the right time, he shared with me; he was ready to begin this process. With the support of O.R.S.A.’s board of directors, Dr. Humphreys and I met with the administration of CHEO and a clinic was established with O.R.S.A.’s financial support. That was over ten years ago. In time, two other Rett syndrome clinics opened up in Ontario. This has been a dream come true for me.
I also would like to thank all those who served on the Eastern Ontario Chapter executive committee and the association’s board of directors. For 18 years, I served as EO chapter president. We worked long hours hosting local
event such as the Mothers Retreat, workshops, the annual family BBQ, volleyball tournaments and as an Ottawa Dragon Boat chosen charity. Together we made a difference locally and became friends while volunteering.
I wish to extend my gratitude to those who have served with me on O.R.S.A.’s board of directors. As a working board, there is a great deal of dedication required by all board members. As president, I have seen the sacrifices each of you have made. It may have been time away from your family, your work, or your personal life. This has not gone unnoticed by me. Together we have accomplished so much for a volunteer charity. Many of you have become close friends and I truly cherish each friendship. I hope we will stay connected in the future.
I cannot finish without expressing my since appreciation to my family. Dean has been beside me throughout this journey. His support has been steadfast for 26 years. He took care of our children so I could volunteer away from home. The amount of trips to CRSA and O.R.S.A. board meetings are too many to count. I could not have given as much as I have without his support. Our children, Brekyn and Parker, have also been a great help. Many times in the younger years, they were busy collating photocopied articles, parent packages, and conference folders. They allowed their mom to miss important events in their lives so I could help others. They welcomed families into our homes without any objections. My mother, Dean’s parents and our extended family members have also been a support assisting with the chapter’s family BBQs, conferences and volunteering at many fundraising events over the years. I cannot express how grateful I am for my family.
There is only one other person to thank. This is my daughter Kayleigh. This year we will celebrate her 29th birthday. She has taught me so many life lessons. The greatest is how to live with a neurological condition. When I was diagnosed with Multiple Sclerosis in 1998, I used Kayleigh as my example and dug deep to accept and move forward. Her grace, determination, and unconditional love have been my strength in trying times. I am so in awe of her each and every day.
Volunteering within the Rett syndrome community has been a great joy and passion for me. I leave the board of O.R.S.A. very proud and content. I encourage those who have not given time to this very determined and dedicated charity to do so. New board members, committee members, and volunteers are always needed and very appreciated. As a volunteer, you will receive more than what you give.
I will spend the next year as past president (without voting privileges) and chair of the Governance Committee. My role is to be available to mentor the board when requested and to support the new president, Kevin Morton for one year. I remain for a period of time as the representative for O.R.S.A. on Neurological Health Charities Canada (NHCC) membership committee and the Province of Ontario Neurodevelopmental Disorders (POND) Parent Advisory Committee. I am excited to see what new ideas and growth lay ahead for O.R.S.A. I will be their loudest cheerleader.
Therefore, in closing, the words thank you seems not enough. Please keep in touch and know that you and your families are forever in my hearts.
Sincerely,
Terry Boyd
Ontario Rett Syndrome Association President
terry@rett.ca
Rett Classic ~ Thank You
Last Updated: 12/08/2016 by Sherry Lawrence
Summer’s in full swing and we’d like to thank everyone for their support this year in raising over $6000 at the Rett Classic. An unseasonably hot May 28th turned out to be a great day to hit the links for over 80 people at the Greens at Renton in Simcoe. The Rett Classic is an important event that helps O.R.S.A. fund Canadian research projects, three Rett Syndrome Clinics, a resource centre, and more. Thanks to all the sponsors and participants that helped make the day a great success.
Platinum Sponsors
Delsal Technical & Environmental Services
Charles Jones Industrial Limited
Gold Sponsors
Smith & Tkaczuk Housing Management Inc.
Superior Essex
Raven Construction
The Wakonig Family
Hole Sponsors
Nissan
Legends
Endries International
Mabel’s Labels
Last Updated: 11/09/2016 by Sherry Lawrence
Step 1: As Campaign Captain (ahoy!), your first step is to visit our website, mabelslabels.com, click the “Support A Fundraiser” button located on the top of your screen, and then select your School/Organization or Camp from the drop-down list.
Step 2: Once your organization has been selected, you will be directed to a landing page that will say “YOUR ORGANIZATION NAME Welcomes You To Our Page > Click here to buy”
Step 3: Go ahead and press the pink “Click here to buy” button. Now, you have entered our website and are crediting your order to your campaign. How can you tell? Your Organization/Campaign Name will be listed on the top left of the screen.
Don’t see it? Then you aren’t in the right place. Call or email us to assist you with placing an order in support of your fundraiser.
CLICK HERE TO GO DIRECTLY TO THE ONTARIO RETT SYNDROME ASSOCIATIONS PAGE
$63,000 ~ Run4Rett 2016!
Last Updated: 12/08/2016 by Sherry Lawrence
The 2016 RUN4RETT was held Sunday, September 18th at Richmond Green Park, in Richmond Hill. It was a beautiful sunny day and many families and friends attended the event.
Thank you to everyone, because of you as of October 21st the total raised is over $63,000!
Thank you to all the volunteers that helped make the event the success it was. Every year the run is fortunate to have many volunteers from Dr. G. W. Williams School in Aurora. Nicole Leach organized a fantastic group of students again this year, we cannot thank you enough Nicole.
Dr. James Eubanks, Dr. John Vincent and their families also attended the run. They both shared a mic and addressed the participants with a few updates regarding research. We also saw Dr. Melissa Carter visiting with families. It is a day for visiting, sharing, remembering and caring.
Together we are building healthy tomorrows! See you at the 13th Annual RUN4RETT in 2017.
The Canadian Rett Syndrome Registry
Last Updated: 09/15/2017 by admin
The Canadian Rett syndrome registry is a national database for individuals diagnosed with Rett syndrome. The registry aims to enroll all living Canadian residents diagnosed with Rett syndrome. Unfortunately at this time the registry will not collect information on people with Rett syndrome who have passed away.The registry is a critical step that will organize the Canadian Rett syndrome population to attract more research opportunities to Canada with a special focus on clinical trials of potential new treatments.
Le Registre canadien du syndrome de Rett est une base de données nationale, conçue à l’intention des personnes atteintes du syndrome de Rett. Le registre s’adresse à toutes les personnes vivant au Canada, chez qui le syndrome de Rett a été diagnostiqué. Malheureusement, le registre ne recueille pas, pour le moment, de renseignements sur les personnes qui étaient atteintes du syndrome et qui sont maintenant décédées.La formation du registre est une étape très importante puisqu’elle permet de structurer les renseignements relatifs à la population atteinte du syndrome de Rett au Canada de manière à multiplier les possibilités de recherche au pays, en particulier en ce qui concerne les essais cliniques de nouveaux traitements potentiels.
Researchers studying Rett syndrome need good information to understand how the disease affects people. Scientists who want to start research studies, including those testing new treatments, can use the registry to find people who are eligible to participate in these studies. This helps to reduce study costs and makes it easier for eligible participants to find these important studies.The registry will serve to improve the quality of life of people affected by Rett syndrome by enabling research into new and improved treatments and by promoting up-to-date and consistent care across Canada.
Les chercheurs qui étudient le syndrome de Rett ont besoin de recueillir des renseignements de qualité pour comprendre comment la maladie touche les personnes atteintes. Les scientifiques qui désirent entreprendre des recherches, y compris des essais de nouveaux traitements, peuvent utiliser le registre pour trouver des personnes susceptibles d’y participer. Cela permet de réduire le coût des études, en plus d’aider d’éventuels participants à connaître l’existence de ces études importantes.Le registre vise à améliorer la qualité de vie des personnes atteintes du syndrome de Rett par la recherche de nouveaux traitements améliorés ainsi que par la promotion de soins uniformes et à jour partout au Canada.
There is no guarantee that your family will benefit from joining the Canadian Rett syndrome registry. However your participation may be important for the following reasons:
Il n’y a aucune garantie que votre famille tirera des avantages de l’inscription au Registre canadien du syndrome de Rett. Toutefois, le fait d’y participer peut aider les chercheurs à :
By clicking the link below you will access the Canadian Rett syndrome registry’s secure website where information for the registry is collected. Before you officially join the registry, detailed information about the registry will be provided for your review. After reviewing the information you will be asked to provide your consent to join the registry. Your participation is voluntary and you may choose to withdraw from the registry at any time.
En cliquant sur le lien présenté plus bas, vous accéderez au site sécurisé du Registre canadien du syndrome de Rett, là où sont recueillis les renseignements. Avant que vous puissiez faire officiellement partie du registre, on vous donnera de l’information détaillée sur le registre. Après que vous en aurez pris connaissance, on vous invitera à donner votre consentement pour participer au registre. Vous êtes tout à fait libre de vous inscrire au registre et vous pouvez décider de vous en retirer n’importe quand.
2016 Research Grant Awarded
Last Updated: 06/09/2016 by admin
$50,000 in Research Grants Awarded
London, Ontario – April 29, 2016 – The Ontario Rett Syndrome Association (O.R.S.A.) Board of Directors has unanimously approved the funding of two $25,000 Research Grants from The Hope Fund. Read More
Last Updated: 08/25/2016 by admin
Medical Symposium
The Ontario Rett Syndrome Association is dedicated to continued medical and public education on Rett syndrome. On Friday, April 22nd, 2016 a medical symposium is being held at the Children’s Hospital of Eastern Ontario from 9:00 a.m. to 12:00 p.m. The leading physicians and researchers in the field of Rett syndrome will be speaking. Medical professionals may participate by attending the symposium or by linking in via Ontario Telemedicine Network (OTN). The general public is able to participate by using the OTN public webinar link. Families are encouraged to share this information with their child’s health care and educational teams. Information regarding the special links can be viewed on the symposium poster. Together we are building a healthier tomorrow for all those courageously living with Rett syndrome. For futher information please email 2016Conference@rett.ca. Watch the Medical Symposium Here.
Conference 2016 Q & A
Last Updated: 06/09/2016 by Sherry Lawrence
Registration Questions and Answers
Do I have to pay a registration fee for both the communication/literacy workshop and the conference?
Read More