Our Board Chair, Claudio Cinapri was happy to welcome everyone - including our online webcast audience - to the 2015/2016 Presentations and Annual Meeting.
This day was our opportunity for staff, board and members to look back at the accomplishments, challenges and successes of the past year. It is also a time to share some of the latest information, research and expertise in fields of interest to our members. Read on to find out about the people behind SB&H and those who we are proud to assist as they strive to achieve their own goals.
Over the past several years we have been very fortunate to have true experts in the field of spina bifida and hydrocephalus. We have had respected surgeons, researchers, nurse practitioners and clinicians providing education about the conditions. Those who have been able to attend our annual meetings have benefited greatly from these sessions.
This year we wanted to broaden this great learning opportunity. For the first time ever we are live webcasting our session. In addition we will be adding the recording to our website following today’s event. We’d like to welcome those who are joining us on the webcast for today’s presentation.
Earlier this summer, we invited members to "ask the expertss" their questions about hydrocephalus. We received a range of questions on diagnosis, treatment and research. Today we are fortunate and honoured to have two noted neurosurgeons here to answer some of those questions.
Our first presenter today is Dr. Abhaya Kulkarni. Abhaya V. Kulkarni is a pediatric neurosurgeon and Professor of Surgery at Hospital for Sick Children, Toronto, a Senior Scientist at the SickKids Research Institute, and Program Director for the Neurosurgery Residency Program at the University of Toronto. He completed neurosurgery training at University of Toronto and his PhD in Clinical Epidemiology at McMaster University. After a pediatric neurosurgery fellowship at Hopital Necker Enfants Malades in Paris, he began his faculty appointment at Hospital for Sick Children in 2003. Dr. Kulkarni’s research focuses on health outcome assessments in pediatric neurosurgery, with special emphasis on hydrocephalus. He is a site investigator for the North American Hydrocephalus Clinical Research Network and has received research funding from several national and international funding agencies. He serves on the Editorial Boards of Neurosurgery and Journal of Neurosurgery.
He will be answering some of the pediatric hydrocephalus and spina bifida related questions we received today for this event. Welcome Dr. Kulkarni.
Our second presenter today is Dr. Andrew G. Parrent. Dr. Parrent received his B.Sc from Brock University in St. Catharines and his MD from the University of Toronto in 1983. He completed a neurosurgery residency at Dalhousie University in Halifax and a two-year fellowship in Sterotaxic/Functional Neurosurgery at The Toronto Hospital.
Dr. Parrent is Assistant Professor of Neurosurgery at Western University and Associate Scientist at Robart's Research Institute in London. He is conducting research in collaboration with Terri Peters of the Robart's Institute to establish a computer based image guided surgical planning system for neurosurgical procedures. He has also developed an interactive video CD for teaching surgical techniques to residents.
Dr. Parrent has contributed to many medical textbooks and has been published in numerous journals including the New England Journal of Medicine and Canadian Journal of Neurological Sciences. Dr. Parrent will be providing an adult care perspective to the questions that we received.
The Association has two programs to assist students, the Dr. E. Bruce Hendrick Scholarship and the Luciana Spring Mascarin Bursary.
The scholarship program was named in honour of Dr. E. Bruce Hendrick as a tribute to his dedication, on-going support and outstanding service to our members. This program was established to encourage and support students with spina bifida and/or hydrocephalus to develop independence; and responsibility for their own future educational directions; and to assist students to pursue their higher educational goals.
The Luciana Spring Mascarin Bursary was established to honour Luciana Mascarin a student with spina bifida who valued her education and had planned to become a teacher. The bursary is awarded to students with spina bifida and/or hydrocephalus residing in the Windsor-Essex and Chatham-Kent regions of Ontario.
Thomas Robert Armstrong of Cayuga is attending Queen’s University to continue his studies in Physics. Thomas is considering a career in professional research or pursuing a PhD and Professorship in physics. He has a history of volunteering for his church and bible school as well as assisting younger members at 4H events. Mr. Armstrong is the recipient of the Graham R. E. Gill Award.
Kayla Blanchard from Bolton will be attending Seneca College to study in their Social Services Worker Program. Kayla has worked at summer camps, babysitting and volunteered at the local YMCA. She loves working with people, reading and cooking. Kayla hopes to get into the Social Services Field. Ms. Blanchard is the recipient of the Michael Bailey Founder’s Award.
Jordann Marie Lachine hails from Simcoe, Ontario. She is attending Mohawk College in the Paralegal Program and hopes to work in a law or corporate office as a paralegal. She has worked summers in law offices and has done a co-op placement in St. Joseph’s Elementary School. Jordann has also done extensive volunteer work at Kids Summer Camp, Norfolk Musical Arts Festival, St. Vincent De Paul, Norfolk Public Library and a museum. Ms. Lachine is the recipient of the Barton Family Award.
Lishan Mailawalana-Arachchi from North York is attending the University of Toronto, studying Public Policy. Lishan’s ultimate goal is to attend Law School to become a lawyer. He has volunteered at the YMCA, Fenside Public School and the Brook Banks Library as well as Holland Bloorview Kids Rehabilitation Hospital. He is the recipient of the Rodney G. Walsh Award.
Tabitha Palmer – recipient of the Robin P. Humphreys Award.
David Grenier – recipient of the Luciana Spring Mascarin Bursary Award.
We wish every recipient success in their chosen courses and future endeavours.
It is our pleasure to recognize and celebrate those individuals who have given of themselves and provided outstanding contributions to the success of the Association.
Our members contribute tremendously to the mission of SB&H in many ways. Some volunteer by being a first contact in their community, organizing support groups and social events, others work bingo events, sell lottery calendars, organize third party and Spirit Wheel Walk Run events across the province. These activities engage those living with the conditions in their communities, increase awareness of sb/h, generate community support and raise much needed funds for our programs and services. We would like to take this opportunity to acknowledge a few of these individuals for their outstanding achievements and who have consistently shown their spirit and passion for the Association.
Amanda Ridding – Ms. Ridding and her husband Kyle first contacted SB&H when she was pregnant with her son Nickolas and became members in 2010. From day one Amanda has been a driving force in her community, “Putting a face to spina bifida” by raising awareness of the conditions and funds for SB&H through their annual Nick’s Cheering Squad Spirit Wheel Walk Run. She is also an annual calendar seller and we are thrilled to have Nickolas’ artwork featured in the 2016 calendar. Ms. Ridding has a family blog highlighting Nickolas’ story and with her nursing background created an about spina bifida blog info site that we share on our website. She helped to create “Our Lives with Spina Bifida” a private Facebook group that allows parents to share and support each other. Whenever we have a parent looking to connect with someone in their shoes we think of Amanda first and she is always willing to link with these families. Amanda and Nickolas came out to our Golf event in May to share their family’s story with our golfers. Today we would like to honour Amanda with the Citation of Merit for her and her family’s continued support of the Association and their volunteer time and efforts on spreading awareness by highlighting the phrase “Someone with Spina Bifida Makes Me Smile Everyday”. (ATTENDING) (Pose for photo)
Mel Katz – In 2002, Mrs. Gilda Katz, a woman whose life had very recently been turned completely upside down by Normal Pressure Hydrocephalus (NPH) worked with SB&H to start the Adult Hydrocephalus Support Group; a group that she has led regularly to this day. We are grateful for her continued commitment to this group.
When the group began in 2002 we also gained another incredible volunteer in Mel Katz, Gilda’s husband. As Gilda’s condition has changed, Mel became a more frequent attendee at the support group meetings. Over the years Mel has offered his support, his voice and his compassion, not only to Gilda, but to everyone at the meetings. With endless patience, he acted as Gilda’s memory when she would try and share her own experiences to help someone going through something similar. As he continued to learn more and more about NPH, his innate drive to research, that came from a long career as a university librarian, soon made him an indispensable part of the Adult Hydrocephalus Support Group. Mel has an incredible ability to make confusing information understood and he ensures that everyone leaves with a better understanding of what might be happening to them. SB&H is so grateful that Mel has given so much of himself to help those who need it. (ATTENDING) (Pose for photo)
Nini Kunu - Ms. Kunu began volunteering for SB&H in July of 2014 and has been a hardworking addition at the Association’s office. She contributes much needed administrative assistance to the staff in the areas of programs, services and fundraising and is eager to pitch in wherever it is needed. Ms. Kunu has given generously of her time in between attending university one to two days a week for the past year. We thank Nini for her continued support of the Association’s work and are pleased to present the SB&H Special Recognition award to her. (ATTENDING) (Pose for photo)
SB&H Community Contacts provide a local presence in 15 communities across the province. These individuals field information inquiries in their community and are the first point of contact with the Association for families, individuals, professionals and the general public in these regions across Ontario. Our community contacts have generously allowed SB&H to publish their contact information in Current and on the website, so those seeking information and support have a lifeline to reach out to locally. Many of the individuals here today have taken on this volunteer position for several years.
We would like to recognize and thank the following: Roger DiBattista, Trudy Baran, Tanya Fortier, Jill Bell, Sara Dias-Mendoza, Kathi Plug, Christie Kopczyk, Sue Westholm, Troy & Annette Chandler, Robin Smith, Joy Betsch (bet-ch) and Shirley Wuerch (were-itch), Bonnie Charbonneau, Mary Dufton, Lorenda Hearst, Maureen Murphy and Diane McKay. I would like to invite all of our Community Contacts in attendance to please come up and accept their awards. (ATTENDING) (Pose for photo) - Shauna will help present to those in attendance.
Rebekah Churchill - Rebekah & Scott Churchill organized the first ever Spirit Wheel Walk Run in Milton, Ontario in June, 2014. The “Walk for Hope” is now an annual event to honour the memory of their baby daughter Hope.
As Rebekah told the local media “We wanted to come up with a way to honour Hope and thought raising donations and awareness would be a meaningful way to do so. We want to be able to improve the treatment for children with hydrocephalus, and through this walk, we will be able to make a difference”.
Over $2,500 was raised for SB&H at the 2014 walk and over $3,500 this past June.
Incredibly, Rebekah organized the 2015 walk while 9 months pregnant, and only FIVE days after it was completed, she gave birth to a beautiful baby daughter named Nya! Congratulations Rebekah and Scott!
Charlene & Emily Giugovaz
A fundraiser called “Emily’s Hearts for kids with spina bifida” put a unique spin on Valentine’s Day. Paper hearts were displayed on the walls of the family business for a $2 donation during the month of February. Over $2,600 was raised for SB&H!
Emily, a very talented 10 year old with spina bifida from Brantford has an incredible voice and spirit to match. She made it to the final 12 of the Hidden Talent Toronto competition, and her version of the song “Change is Gonna Come” with Canadian Idol judge Zack Werner on YouTube is absolutely amazing! It’s our pleasure to recognize Emily and her mom Charlene for raising awareness of spina bifida and their fundraising efforts for SB&H.
I’d also like to take a moment to mention two other volunteers who have contributed so much to the Association but were not able to attend today for us to thank in person.
Jill Bell who is also being awarded the Citation of Merit. We would like to thank her formally for her volunteer involvement as a community contact, parent link and for creating a Facebook group for families living in Southwestern Ontario.
Dayna Morris who is also being award the SB&H Special Recognition award. We thank her formally for her volunteer involvement. Dayna has made Monday mornings in the office bearable for the last three years and we are looking forward to her assistance at the beginning of each week.
Bonnie Charbonneau for whom this award is named is in attendance today. Ms. Charbonneau, could you please come up to present this award.
Joan Booth - "The Bonnie E. Charbonneau Award of Distinction" is given to honour those who have inspired in all of us Hope, Courage and the Strength to Persevere. Joan Booth is a most deserved recipient of this distinguished SB&H award.
For 22 years, Ms. Booth was the glue that held the Association together and she believed whole-heartedly in the vision and mission of SB&H. She began her relationship with SB&H, in the early 1980’s when her oldest daughter Laura was born with spina bifida and hydrocephalus. Joan not only brought her business and management skills to SB&H, but her trailblazing attitude for change. Her journey as a parent and volunteer provided her with unique insight and compassion and she always put individuals and families first.
A team player with effective leadership skills, Joan worked to ensure SB&H remained relevant for more than two decades. She has been deeply committed to enhancing public awareness and providing individuals and their families’ access to information and resources to enhance their quality of life and help them reach their full potential. Joan’s tireless commitment to the Association is reflected in her many accomplishments, such as providing opportunities for people with sbh to volunteer and work at the Association offering valuable training and knowledge about sbh, building partnerships with various hospitals and treatment centres, medical professionals and other organizations throughout Ontario. She recently retired as the SB&H Executive Director, but her passion for the Association is still very active as she continues to assist us by volunteering her time and expertise.
Congratulations Joan and thank you for your dedication and support to SB&H.
Congratulations and thank you to all of this year’s award recipients.