Summer 2004 - Thalassemia Foundation of Canada

Summer 2004
FROM THE DESK OF THE PRESIDENT
EXECUTIVE
DIRECTORS
Corrado Falcitelli, Hon. B.Sc.
President
Riyad Elbard
Vice-President
Tony Marra
Immediate Past President
Alfonso Sinaguglia
Treasurer
Silvia Livia
Secretary
TRUSTEES
Vikram Bhatija
Angela Costa
Joe Costa
Angela Covato
John Maiorano
Angela Polsinelli, M.Ed.
Tony Tsao
Anna Vizza
BOARD MEMBERS
Vincent Bueti
National President
Order Sons of Italy of Canada
Dr. Douglas Templeton
University of Toronto Chair,
Medical Advisory Board
Howard Leung
Co-ordinator,
Medical Advisory Board
Jerry Spataro
President
Siculiana Family Social Club
CHAPTERS
Anita Aimola
President
Guelph Chapter
Rose Pallone
President
Winnipeg Chapter
any exciting things
are happening to
the Thalassemia Foundation of Canada that
favours our crusade
towards better patient
care.
A committee task force
was set up after several
meetings to spear head
our Political Lobbying
Campaign to increase the
cap on the adult program
that is financially unable
to allow more adult patients to be treated properly. This task force was composed of patients, parents, doctors and
assisted by our good friends at the
Anemia Institute. A coordinated effort
publicizing the lack of Thalassemia
Funding at Queen’s Park to coincide
with International Thalassemia Day
(May 8). Media was present and our
plight was heard. We have a long journey in this matter but I am confident
that our dedicated task force will
accomplish and deliver this goal for the
Thalassemia patients.
We also have several of our associate
patient charities hosting conferences to
advance a union for common objectives
instead of working separately.These will
be occurring beginning June of this year
and more will be coming in the
approaching months. The Foundation
has been affiliating itself and collaborating with various organizations, such
as our own, to be able to work together
and to realize that strength in numbers
will be our driving force and eventual
focal point for success.
M
I am happy to announce
that the Foundation will
be moving into our new
office head quarters
located at Casa Abruzzo
Bene-volent at 338
Falstaff Avenue, in North
York and our monthly
meetings will also be
held at this location. The
meetings will be held on
the third Monday of
every month at 7:30 pm.
The
exact
mailing
address and other details will be posted
on our website as well as our next
newsletter when we move in during the
summer months. This will enable us to
establish a central office with records
and educational material. More details
to follow.
Please check updates at www.thalassemia.ca for Swimming Pool Charity
Car Wash, ROMA Fence Golf Tournament,
Annual Car Raffle and other exciting
events.
I wish you and your families all the best
and a very healthy and joyous summer.
Sincerest Regards,
Corrado Falcitelli, President
IN THIS ISSUE
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•
•
•
•
•
•
•
Roma Companies Annual Golf Tournament
National Liaison Committee
Hemoglobal’s Sri Lanka Sponsorship Program
2004 Car Raffle Grand Prize winner
Annual Valentines Dinner/Dance
Advocating for Adequate Adult Care
Thalassemia Foundation of Canada Membership
Press Release
R O M A C O M PA N I E S A N N U A L G O L F T O U R N A M E N T
hen we think of generousity, we think of provi-
Thalassemia Foundation of Canada. This year our
annual golf invitational will be held on July 21st,
2004 at Kleinburg Golf and Country Club. Our dinner will take place at Renaissance Parque Banquet
Hall and Convention Centre, directly following the
tournament.
We look forward to seeing you there and thank you
in advance for your generousity.
Wsions of help or relief offered to those less for-
tunate than us, the institutions and organizations
established that direct our common goals of kindness, and of the willingness, one has, to give.
It is around this time every year that we appeal for
your generousity, your support and participation in
our annual golf invitational.
Your readiness to contribute has allowed us seven
years of success in raising proceeds for the
Christina Marra
N AT I O N A L L I A I S O N C O M M I T T E E
n February 2, 2004, I had the pleasure to attend
A new donor database, Mak Progesa, has now been
introduced in order to capture and track all information from the donor to the issuing of the blood components to hospitals. This new single national donor
database has replaced 14 older databases.
A "diversion pouch" to collect blood has been introduced by CBS. This diverts the skin plug caused by
needle insertion and eliminates the source of contamination from the blood bag.The pouch was implemented in February of 2004.
The Unrelated Bone Marrow Donor Registry
(UBMDR) currently has 227,131 possible donors in
Canada. Most people between 17 and 50 years of
age can become possible bone marrow donors if
there is a good match to a patient in need of a bone
marrow transplant. CBS is hoping more volunteers
will be added to the UBMDR not just in Canada, but
around the world. Canadian donors harvested for
Canadian patients were 52 and International donors
harvested were 142 for Canadian patients in 2002.
In conclusion, thanks to newer technology introduced in software and equipment being utilized, CBS
is managing to collect, test and distribute safer blood
products in higher volume.
We are all encouraged to participate in the blood
donor program. Please remind family and friends of
the vital importance of donating.
Othe Canadian Blood Services National Liaison
Meeting in Ottawa. There were many doctors and
representatives from other groups that use blood
products in attendance. We touched upon many
important blood issues. A number of doctors and
individuals presented valuable information that I
would like to report upon.
Canadian Blood Services (CBS) has transformed
itself into a very well managed and much safer blood
system than what we had as little as five years ago.
As most of you know, Dr. Graham Sher, who used to
work in the Thalassemia Program at Toronto General
Hospital, is now the CEO of CBS. I have praised his
ongoing work at CBS.
CBS has commenced a new number campaign
1-888-2-DONATE with much success. Most people
have now heard of this telephone number through
their constant advertising campaigns. The number of
donors has increased slightly. It is still a far cry from
where we should be. CBS continues to work diligently to increase the volume of blood and donors.
CBS tests blood for Hepatitis C, West Nile Virus,
HIV and other infectious diseases. Most of these
tests are now automated thanks to new technological
software and equipment.
A new National Contact Centre (NCC) has been
established by CBS in Sudbury, Ontario. This centre
provides current and future blood donors with many
answers to questions posed. Scheduling of blood
donor appointments and locations of clinics are also
handled by the NCC. Much is done here to accommodate donor retention and encourage new donors.
"BLOOD, IT'S IN YOU TO GIVE."
1-888-2-DONATE
John Maiorano
Trustee - Thalassemia Foundation of Canada
2
KIDS COLOURING CONTEST
f you're 1 to 13 year old thalassemia patient, you
1M2 with your name, age, and return address. You
can also download the colouring page on our website
at www. thalassemia. ca . Hurry and get colouring,
the contest closes September 10, 2004 and all artwork will be judged and prizes awarded September
25. Winning artwork will be featured in winter edition of Thal-a-Vision. Good Luck!
Ican enter The Thalassemia Foundation's colouring
contest. Kids can win great prizes from toys to movie
passes. Age categories as follows: 1 to 5, 6 to 9, and
10 to 13. MAIL YOUR FINISHED ARTWORK TO:
Thalassemia Foundation of Canada’s Colouring
Contest - 32 Fern Avenue, Weston, Ontario, M9N
When people give blood, they give the gift of life, not once but three times!
One donation of blood can save up to three lives.
One donation of blood can save up to three lives.
Community Partners:
Please send to: Thalassemia Foundation of Canada
Colouring Contest
32 Fern Avenue
Weston, Ontario
M9N 1M2
CONTEST ENDS: SEPTEMBER 10, 2004
3
UPDATE: 50 PUMPS DONATED TO SRI LANKA
THROUGH HEMOGLOBAL’S SRI LANKA
SPONSORSHIP PROGRAM
Hemoglobal THANKS TO ALL WHO DONATED!!! BUT WE STILL NEED YOUR HELP...
he word is getting around about the Sri Lanka
where thalassemia is extremely common. This community does not receive financial aid of any type, and
therefore are in desperate need of funding for treatment. We are in the process of developing a program
in Orissa that will make it possible for these underprivileged patients to gain access to proper thalassemia treatment and care.
Our initiatives are ongoing, and we still need YOUR
HELP! To become a part of this important effort
and to provide a child with the chance to live, please
send a cheque payable to:
TSponsorship Program at Hemoglobal. This is all
thanks to the positive responses and several contributions, such as the generous donation from the
Thalassemia Foundation of Canada in memory of
Mr. Cardinale. The Sri Lanka Sponsorship Program
was launched by Hemoglobal 2 years ago to help
raise funds to bring the thousands of children in Sri
Lanka affected with thalassemia the proper medical
care to survive. Although the Sri Lankan government
pays for all of the medicine needed for these patients,
the pump that must be used to give the medicine is
too expensive for most families to afford. These children do not receive the medicine they need to survive
only because they do not have the money to pay for
a pump. Hemoglobal has been working with computer technicians in Sri Lanka to develop an affordable
pump for thalassemia patients. A durable and accurate medicine pump has been developed at a cost of
$200 CAD each. This is one-tenth the cost of other
available pumps, but still more than the average
annual salary in Sri Lanka and much more than
most families can afford. Over the last few weeks
Hemoglobal has attended the International Health
Conference hosted by the University of Toronto and
The Thalassemia Action Group conference in
Chicago, Illinois. You may have recently come across
a colourful donation box and noticed that
Hemoglobal has also launched the Thalassemia
Donate-A-Toonie campaign within TGH. The project
has been well received and support has been rapidly
increasing. To date, Hemoglobal is
thrilled to report that we have been able
to raise funds for 50 pumps, drastically
changing the lives of those fortunate
children who can now live full and
healthy lives.
This is an incredible accomplishment,
and we couldnít have done it without
the support of the members of the thalassemia community in Toronto.
However, our mission CANNOT stop
Doctor's
there. Hemoglobal has extended its
pur-from England, US,
and Italy
suits into Orrisa, an eastern Indian state
Sri Lankan Thalassemia Child Sponsorship Program
c/o Hemoglobal, University Health Network
200 Elizabeth St. TGH ES12-412
Toronto, ON M5G 2C4
Each donation of $200 CAD will purchase a medicine pump for one child. 100% of all proceeds will
go directly into the purchase of a pump and all donations are tax deductible.
And please continue to help us spread the word,
and make a difference.
If you would like to know more about this program,
please contact Robin Kotisa and Amy Mapara at
416-340-4800 x 2738 or visit our website at
www.hemoglobal.org.
Thanks again, we hope to hear from you,
Robin Kotisa, Amy Mapara - Hemoglobal
4
2004 CAR RAFFLE GRAND PRIZE WINNER
ongratulations to our 2004 Car Raffle Grand
Prize winner: Lyndon Gonzalez ticket #5017,
seen in picture at driver’s door with son and the
Executive Board Members of the Thalassemia
Foundation of Canada. I would like to thank all who
participated and made this event a success. This
year’s vehicle will be chosen in August and displayed
by October 2004. If you would like to directly help by
hosting the vehicle at your location and/ or sponsoring advertising decals on the vehicle, you may contact me at [email protected]
Special appreciation to all corporate sponsors
that helped sell tickets at their locations including:
• Royal Group Technologies (Royal Foam Division)
• Swimming Pool Restaurant (3200 Dufferin Street)
• Sherway Gardens
• TD Bank (4499 Hwy #7)
C
A great appreciation to everyone involved in our
efforts and I am pleased to say that we sold over 4500
tickets for the MINI draw. This was a successful
endeavor for the Foundation. Good Luck next year!
Corrado Falcitelli
• Acceso Restaurant & Wine Bar (398 Eglinton
W)
• Apotex Inc. (150 Signet Drive)
• College Medical Pharmacy (474 College
Street)
• Norwest Precision Ltd. (460 Signet Drive)
• Novex Pharma (380 Elgin Mills Road East)
• Poolside Tanning Spa (3250 Dufferin Street
and 2943 Major MacKenzie Dr.)
• Roma Fence (24 Cadetta Road)
SINCERE THANKS FROM THE
THALASSEMIA CHRISTMAS COMMITTEE
Children, we were also fortunate enough to have some
funds left over to purchase a much needed microwave
for the adult thalassemia clinic at the Toronto General
Hospital.
The Thalassemia Christmas Committee is dedicated to
bringing a smile to the faces of our patients. All proceeds raised are reinvested in our patientsí quality of
life. We are dedicated and have big hopes for the future
of these patients. We hope 2004 brings happiness, good
health, and unity to everyone.
ur 2003 Christmas Drive was a wonderful suc-
Ocess. The community support we received was
absolutely heart warming. When the idea was originally launched to have individuals help fill a gift bag
for our Thalassemic patients, we did not anticipate
the outstanding support and enthusiasm brought forward by so many. We approached may people to promote awareness for Thalassemia and to encourage
community spirit and gift giving at Christmas, it was
embraced wholeheartedly. We would like to extend
our gratitude to all of the individual families and
friends throughout the Oshawa, Toronto and
Richmond Hill areas who gave so very generously.
This years Christmas drive reached a incredible milestone. In addition to provding gifts to all the children in
the thalassemia program at the Hospital for Sick
Sincerely,
The Thalassemia Christmas Committee
Anna Maiorano,Lina Pedota,Anna Vizza,
and Julie Vizza
5
THALASSEMIA FOUNDATION'S
ANNUAL VALENTINES DINNER/DANCE
n February 14, 2004, the Thalassemia
Foundation of Canada celebrated it's 15th
Annual Valentine's Dinner Dance. The gala event this
year was held at The Royalton Banquet & Convention
Centre located on Weston Rd. in Vaughan.
Approximately 550 people attended the event.
This year's event was also a huge success. Mr. Sam
Ciccolini started off the evening with introductions.
Once the introductions were completed, dinner commenced with a fabulous and exquisite 6 course meal.
The food and service at the Royalton was without a
doubt, exceptional. People who attended the event had
a great time and were very
pleased with the food, service,
and music. We all danced to
the sounds of "September".
During dinner, many activities took place such as our
raffle of prizes, our speech
presentation by Dr. Eric
Nisbet-Brown, and our
awards presentations. Our
silent auction items provided
by Vriesen Auctions and the
lovely and exquisite jewellery
provided by Fifth Avenue
Jewellery were being sold
throughout the evening. We
also held a live auction which
raised over $3,000.
Award recipients this year
included Mr. Sam Ciccolini
receiving the Heart Award,
Mr. Tony Tsao receiving the
Appreciation Award, and Ms.
Anita Aimola receiving the
Alex Georgakopoulos Memorial Award.
Once dinner and presentations ended, our live band
"September" was ready to get
everyone dancing on the
dance floor. Once again, the
band was excellent and made
everyone enjoy the evening
with their sensational music.
As the evening was coming
to an end, we held our Mini
Cooper Vehicle Lottery Draw,
the moment that everyone
was waiting for. Andrea
Travaglio, a Thalassemia
patient, drew the ticket of the
O
6
lucky winner. This year's winner of the Mini Cooper
happened to be an employee of Apotex Inc.
A special thank you goes out to the entire Valentine's
Dance Committee for all of their hard work and dedication in making this event, an event to remember. Mr.
Sam Ciccolini, once again for being our master of ceremonies and for all of his dedication and support over
many, many years. Other thank you's include individuals
who sold tickets to make the event a success; The
Royalton Banquet Hall for their outstanding service
and food; to all individuals and corporations that donated funds and prizes; and finally, Corrado Falcitelli for
his dedication to our Mini Cooper Vehicle Lottery Drive.
This year's event raised approximately $85,000 which
will assist in funding of research grants and patient
care. Thank you to each and everyone of you who
attended our event!
We hope that we
can continue to
receive your support
in the future years
to follow so that we
can reach our goal,
to find a cure for
Thalassemia!
Alfonso Sinaguglia
2004 Valentine's
Dinner Dance
Chairperson
Mark your calendars!
The Thalassemia Foundation of Canada’s 16th Annual
Valentine’s Dance is going to be held on February 12th, 2005 at
Renaissance Parque Banquet Hall (located at 2800 Hwy # 7
West, Concord, Ontario)
7
ADVOCATING FOR ADEQUATE ADULT CARE
AT TORONTO GENERAL
WORKING GROUP SPEARHEADS CAMPAIGN
A working group was formed at this emergency
meeting. The members of the group include: Riyad
Elbard, Durhane Wong-Rieger, Anna Vizza, Angela
Polsinelli, Giulia Muraca, Angela Covato, and Dr.
Eric Nisbet-Brown. A strategy was formulated and
the campaign was spearheaded by Riyad Elbard, Vice
President, Thalassemia Foundation of Canada and
Durhane Wong-Rieger, President & CEO of the
Anemia Institute for Research & Education. For the
past 3 months, the group along with other members
of the thalassemia community has been delivering the
message that patients will not accept the current situation. This has been achieved by an aggressive
media campaign and intensive lobbying to Members
of Provincial Parliament (MPP’s). A press conference was held in Queen’s Park on May 4th and the
topic was featured on 3 local TV stations. The thalassemia community at large, along with doctors and
patients and advocates has been very successful in
getting the attention of the Ontario Government and
hospital administrators regarding this ongoing issue.
A petition was circulated among the community,
posted on our website, and made available at the clinics in both HSC and TGH, with an overwhelmingly
positive response. This petition was endorsed by Dr.
Kuldip Kular, MPP for Bramalea-Gore-MaltonSpringdale and will be filed in July at Queen’s Park.
On July 13, 2004, we will have the opportunity to
host a symposium in collaboration with the Anemia
Institute for Research & Education on "Best
Practices in Thalassemia Care: Canadian and
International Perspectives" to be held here in
Toronto. In attendance will be Dr. Vichinsky from
Children's Hospital Oakland and Dr. John Porter
from University College London Hospitals to participate in this one-day symposium towards helping to
develop the comprehensive Thalassemia Program in
Toronto. These are probably two of the most foremost experts on thalassemia care in the world. Both
head up programs that are considered to be international models. In addition, we will be discussing
essential components of a proposed Comprehensive
Thalassemia Program in Toronto including transfusion, chelation, monitoring, coordination of care, psychosocial support, transition from pediatric to adult
care, administrative support, and research.
cont’d
EMERGENCY MEETING HELD
On April 3, 2004 the Thalassemia Foundation of
Canada held an emergency meeting regarding the
continuing risks to patients caused by program capping at the Toronto General Hospital Thalassemia
Program. This meeting was attended by a variety of
people including patients, parents, board members,
doctors, researchers and advocates. The discussion
focused on goals and visions for an ideal Thalassemia
Program. The goal of the Toronto Thalassemia
Program would be to provide coordinated, comprehensive and cost-effective care to adolescent and
adult patients with thalassemia who live in the
Greater Toronto area, and to provide a resource for
specialized care for patients living in other Ontario
centres.
THE CURRENT PROBLEM
Thalassemia was once considered a disease of childhood. Fortunately, advances in treatment are allowing
people with thalasemia to live longer lives but as the
number of adults grows, we need sufficient resources
at Toronto General Hospital to provide adult treatment and care. At present, the adult program at the
Toronto General Hospital is capped at 99 patients.
Patients cannot be transferred from the pediatric program at the Hospital for Sick Children or from out-ofprovince unless an existing patient dies or moves away.
There are currently approximately 35 “over-18”
patients who remain at the Hospital for Sick Children
for their thalassemia care, but who cannot be admitted to HSC in the event of severe problems.This number of “over-18” patients is projected to increase to
60 patients by 2005, because of the increasing average age of the patient population. As patients reach
adulthood, it is important that they are treated in an
adult program. Physicians, patients, parents, and the
Thalassemia Foundation of Canada have met repeatedly with hospital administrators at Toronto General
Hospital, Toronto District Health Council, and
Ministry of Health to discuss the need for increased
clinical staffing, adequate funding for drug therapy,
and access to supportive services. The District Health
Council report resulted in a plan of action published in
March 2003 but there has been no action on the plan
and the clinic capping issue remains unresolved. The
adult program must expand to accommodate these
patients as an urgent priority.
8
DEAR MEMBERS OF THE
THALASSEMIA FOUNDATION OF CANADA
In memory of Mr. Peter Cardinale
This is Shanika and Kavinda. They both
live with their families in Kurunegala, a
small city in the mid west region of Sri
Lanka. They are both young thalassemia
patients who receive treatment including
monthly transfusions and medical care at
the Kurunegala Teaching Hospital. Dr.
Weatherall, Dr. Olivieri, and the Hemoglobal team visit this hospital four times a
year to treat Thalassemia patients and
educate Sri Lankan doctors in optimum
patient care and recent advances in
Thalassemia research.
The medication pump, which your donations purchased, was given to Shanika and
Kavinda during Hemoglobal’s last visit in
February 2004, and it now delivers the
daily treatment they need to survive into
adulthood. Hemoglobal and the families of
Shanika and Kavinda would like to thank
you for giving them the chance to grow up.
Shanika
Kavinda
MEMBERSHIP
Friends,
At the present time we are hoping to increase our membership to assist in the fight against Thalassemia.
Membership is a crucial part of our existence and without
everyone's help and support, we would not be able to meet
the challenges ahead of us.
According to our records, many of our memberships have
not been renewed. If you haven't already, please send us your
name and address, with your $10 yearly membership fee. You
will then be on our mailing list, (if you wish) to receive our
newsletter and you also become a voting member in which you
can exercise your right to vote on our Foundation.
VOLUNTEERS NEEDED:
We urgently need some more involvement from the
Thalassemia community. We would like to see some new faces
and welcome any help we can get. We invite anyone and everyone to please get involved. By coming to the meetings you will
be kept up to date with current and worldwide events pertaining to Thalassemia patient care. We have a few fundraisers
happening this year so we hope to see you there. Our meetings
are held every third Monday of the month at our new location:
Casa Abruzzo (Keele & Hwy 401).
WHAT THIS MEANS FOR OUR FUTURE
With all these initiatives taking place we are making excellent progress working toward resolving this
critical issue for our adult thalassemia patients in
Toronto. The work is by far not complete and will
take more effort from all of us in the Thalassemia
Community.
I wish to acknowledge the hard work and time this
working group has devoted to this important issue,
and foremost, to express gratitude to our mentor and
former President Chris Bennedsen. Chris’s contribution to this issue was part of his commitment to
ensure patients with thalassemia were properly cared
for. He provided invaluable insight and input for our
crusade until he passed away on December 26, 2002.
I know Chris would be very proud of our hard work.
Thank you for your support! Angela Costa - Trustee
Angela Covato
9
PRESS RELEASE - TUESDAY, MAY 4, AT 11:00 AM
PREMATURE DEATHS OF YOUNG ADULTS
WITH THALASSEMIA
URGENT NEED FOR FUNDING IN ONTARIO
oronto, ON - May 4, 2004 – Over the past couple
of years, more than a dozen patients with thalassemia major, a form of severe anemia that
requires monthly blood transfusions, have died. Many
of these deaths were avoidable.
Thalassemia is an inherited blood disorder found
primarily among ethnic groups from around the
Mediterranean region, including those of Italian,
Greek, North African, East Indian, Chinese, Lao, and
Filipino descent.
The deaths occurred among young adults, all living in
the Toronto area, most of whom had survived a blood
supply in the 1980s that was at high risk for contamination with HIV and hepatitis C.They died, not because
of contaminated blood but of something more tragic:
the lack of resources for adult thalassemia care.
Today, representatives of the Thalassemia Foundation of Canada, the Anemia Institute, and families
affected by thalassemia gathered in the Main
Legislative Building of Queen’s Park to bring their
plea directly to the members of Ontario parliament.
“I can’t do anything for my daughter but I am here
today because I want to make sure it doesn’t happen
to another family,” said Jan Tonna, whose 19-yearold daughter died from complications associated
with thalassemia.
LACK OF FUNDING FOR ADULT PROGRAM
About a generation ago, it was rare for patients
with thalassemia to live beyond their teens, primarily
as a result of heart and liver failure. But thanks to
advances in treatment, most patients are now living
into adulthood, completing their education, having
careers, and raising families. For years, having thalassemia in Canada meant having access to the highest standard of care in the world.
Unfortunately, provincial funding for the only adult
thalassemia program in Ontario has been restricted
to 99 patients since the late 1990s. Consequently, as
thalassemia patients at the Hospital for Sick
Children turn 18 years of age, they have nowhere to
go. There is no more room in the program at the
Toronto General Hospital.This means they do not get
appropriate adult monitoring and they cannot access
appropriate support for emergency care.
“For 18 years, you receive wonderful care.
Suddenly you’re told there’s no room for you in the
adult program. So you get transfusions at one place
and emergency care somewhere else. And you hear
that a kid who you knew from the transfusion program has just died, and you don’t know why. It is
very, very frightening.” Julie Vizza, 19-year-old living with thalassemia.
According to Dr. Ian Quirt, hematologist for the
adult thalassemia program at TGH, “Pediatric specialists, no matter how expert, cannot be fully
informed about the ‘adult’ complications of thalassemia, particularly heart, liver and endocrine disease.” When these adult patients develop complications, they are admitted to an adult hospital, where
their medical history is not available and physicians
are often unaware of the special problems associated with thalassemia. Both the Hospital for Sick
Children and the Toronto General Hospital have
urged the province to provide the necessary resources
to the adult program.
“The need to continue to care for thalassemia
patients over the age of 18 puts a strain on our
resources and is not optimal for the patient. We need
to help them make the transition to an appropriate
adult clinic,” said Dr. Victor Blanchette, head of
pediatric hematology at Sick Kids.
CALL FOR IMMEDIATE ACTION
The Thalassemia Foundation and the Anemia
Institute for Research & Education have met with the
hospitals, the regional health authorities, and the
Ministry of Health, pleading for additional resources for
adult thalassemia care. While the response has been
sympathetic, there has been absolutely no increase in
funding. Meetings with the Regional Health Authority
resulted in a plan of action published in March 2003
but there has been no action on the plan.
Two recent deaths of young adults with thalassemia have propelled the community to demand
immediate action. We are concerned that this pattern
of premature and unnecessary deaths will continue.
It puts all Ontarians with thalassemia at risk.
T
cont’d
10
2ND INTERNATIONAL THALASSEMIA
ASSOCIATIONS WORKSHOP
IF has recently hosted the 2nd Associations
Workshop on May 22-23 at The Hilton Park Hotel
in Nicosia, Cyprus. Following the tremendous success of
the first International Thalassemia Associations
Workshop held in September 2002 and to the request of
many of TIF member associations, TIF has committed
to organize Associations Workshops every two years.The
workshops provide great opportunity for Thalassemia
Associations from around the world to come together
and share ideas and experiences.
The opening note by Mr. N. Michaelidoy, Vice-president,
Cyprus Thalassemia Association was followed by a welcome speech from Mr Panos Englezos TIF Chairman. Dr.
Andrula Aleftheriou delivered a brief introduction of the
objectives, the agenda and format of the workshop.
This year’s workshop included an educational program
focused on assisting Thalassemia Associations to become
stronger and more affective in their work. Delegates from
international associations, doctors and representatives
from pharmaceutical companies participated at the event.
Dr Farrukh Shah presented a medical update on two
interesting topics. Her first presentation was on The
“Ideal” Treatment Centre, and her second presentation
was on the present and future of Clinical Management of
Thalassemia. Dr Shah has recently been appointed to the
position of consultant haematologist at The Whittington
Hospital in London, UK, replacing Dr Beatrix Wonke
after her retirement. I have full confidence that Dr Shah
will be another great expert on thalassemia and will contribute immensely to the fight against thalassemia in the
near future.
Presentations and topics of discussions for the educational program focused on fundraising, and setting up and
promoting Thalassemia Associations. Also presentations
on activities, functions and responsibilities of a
Thalassemia Association were part of the agenda.
Thalassemia associations from US, Greece, Saudi Arabia,
Lebanon, Palestine, Egypt, Pakistan, India and Taiwan
delivered case presentations on successful achievements in
their respective countries.
Mr. P. Elides discussed a setting up of an association in
a very informative presentation. Towards the end of the
program he facilitated an interactive session that was
very motivating and exciting. The session was very successful in getting experts and participants to work collectively on creating a tool kit for future needs based on
previous experiences.The ideas and information collected
will be summarized by TIF Office to produce a guide that
will be designed to benefit all associations on starting a
major project or for new associations on for setting an
association.
Novartis Pharmaceuticals hosted an information session
on Friday May 21. An update on Exjade (ICL 670) the
new oral iron chelator was presented. The ongoing trial
studies conducted in various countries has been indicating
good results and Phase III trials of the study are started.
Also other pharmaceutical companies participating at the
workshop were given an opportunity to provide updates on
their products during the workshop.
The workshop was very successful in achieving its goals
in bringing together the National Thalassemia Associations
to work collectively on the fight against Thalassemia across
the world. The workshop will enhance collaborations of
associations with TIF and collaborations among associations. The hard work of TIF Office Staff and the efforts of
TIF Chairman, TIF Board Members and the Cyprus
Thalassemia Association were recognized and applauded
for the success of the workshop. TIF will continue its
efforts to meet its commitment in organizing International
Associations Workshop as a bi-annual event.
The Thalassemia Foundation, the Anemia Institute,
and all families affected by thalassemia call upon the
Ministry of Health for two things.
First, we request the Ministry of Health look into
the causes of the deaths of the 15 young adults with
thalassemia who have died over the past two to three
years. In the same period of time, we note that the
program in the United Kingdom has lost NO adult
patients born since 1974. We need to know the rea-
sons why our young people died and how we can prevent more deaths in the future.
Second, we request an immediate allocation of funding to the adult thalassemia program to allow patients
to be transferred from the Hospital for Sick Children
to the adult program. There are currently about 35
patients over the age of 18 years of age who are not
able to transfer from Sick Kids and there will be about
60 patients as of the end of next year.
T
Riyad Elbard
Vice-President,
Thalassemia Foundation of Canada
11
UPCOMING EVENTS, FUNDRAISERS & CONFERENCES
• Launching of our re-designed website - October 2004
• Winnipeg Chapter Fundraising Dinner - September
16, 2004
• Sons of Italy- October 2004
• Guelph dinner/dance - November 2004
• 16th Annual Valentine’s Dance - Feb. 12 @
Renaissance Parque Banquet Hall
• Car Wash @ Swimming Pool (TBC) August 28/04
1Oam-6pm more info will be posted on our website
and www.theswimpool.com closer to event date
• CAR Raffle events to be posted on our website
THALASSEMIA WORD SEARCH
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CHANGE OF ADDRESS
Please send change of address to:
Thalassemia Foundation of Canada
32 Fern Avenue, Weston, Ontario M9N 1M2
Name ______________________________________________________
New Address ________________________________________________
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Contact Us
Thalassemia Foundation of Canada
32 Fern Avenue, Weston, Ontario M9N 1M2
Phone: (416) 242-8425 Fax: (416) 425-6354
Email: [email protected]
Website: http://www.thalassemia.ca
___________________________________________________________
City ________________________________________________________
Province ____________________________Postal Code _____________
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Editor: Angela Covato
[email protected]
Special thanks to all who contributed articles
and pictures for this newsletter.