23rd annual valentine’s dinner danceto 10, 2012, tif held its first pan-asian conference on...

By Enza Salituro

On May 6, 2012, the second annual Walk-for-Thalassemia took place, and was anothergreat success! The event, benefitting theThalassemia Foundation of Canada, was heldat Ester Lorrie Park in Etobicoke (Toronto).The funds raised are completely dedicated toeducation, research, and providing necessarysupport for patients in Canada who havethalassemia.

With the sun shining and spirits high,participants embarked on either the five

kilometre or nearly 10 kilometre route. Somepeople chose to do a leisurely stroll, using theopportunity to catch up with friends as theywalked, while others opted to get their dailyexercise in and run the course. Everyoneinvolved was easy to spot, seeing as eachparticipant received a vibrant red t-shirtcourtesy of sponsor LiUNA – Local 506.

Following their return, participants werewelcomed back with fresh popcorn, made onsite at the popcorn stand, also donated byLiUNA. Guests were also offered cold water,fresh fruit, and (Continued on page 11)

On February 11, 2012, the ThalassemiaFoundation of Canada held its 23rd AnnualValentine’s Dinner Dance. The gala event,held this year at The Royalton Banquet Hall inWoodbridge, Ontario, is the Foundation’slargest fundraiser to support thalassemiapatients and their families, and to assist infunding research on treatments for the disease.

Shortly after arriving at the hall, guestsindulged in a deluxe antipasto bar as theymingled with their friends. They were thenformally welcomed to the event by theevening’s masters of ceremonies, AngelaMarra-Sudano and Gabe Lollino. During thefour-course dinner, Rachel Cleland and Jason

Lamont wowed the crowd with their amazingvoices as they performed a number ofwell-known classical pieces. Also duringdinner, Dr. Isaac Odame, co-director andstaff physician of the HemoglobinopathyProgram at The Hospital for Sick Children,presented his heart-felt talk as the evening’sesteemed guest speaker.

The Thalassemia Foundation of Canadauses the dinner dance as an opportunity tobestow awards on deserving individuals. Thisyear, three awards were presented: theAppreciation Award was given to LisaD’Annunzio; the Chris BennedsonPresident’s Award (Continued on page 14)

NEWSLETTER OF THE THALASSEMIA FOUNDATION OF CANADA

23rd Annual Valentine’s Dinner Dance

Winter2013

The TFC Board presents thalassemia clinic doctors with a cheque for $110,000 for thalassemia research

Second Annual Walk-for-Thalassemia

I n Th i s I s s ue2012 Valentine’s Dinner DanceThe TFC’s signature fundraisingevent was another grand success

1

Walk-for-ThalassaemiaThe TFC hosts its second annual

walk-a-thon fundraiserBy Enza Salituro

1Update – Thalassemia

International FederationBy Riyad Elbard

3Scholarship Awards

A 2012 Secondary Student ExcellenceAward recipient explains why the

younger generation of patients must getinvolved in thalassemia awareness

By Tony Falcitelli and Hafsa Hafsa4

Grant Competition UpdateA researcher from the University ofCalgary shares information on her

grant-funded studyBy Dr. Farzana Sayani

5

Donor CornerA spotlight on thalassemia patient

Anita AimolaBy Helen Ziavras and Anita Aimola

8

My Experience Living withThalassemia

A first-person account of life with achronic illness

By John Principato9

Colleen JohnsonAn interview with a nurse practitionerfrom the Toronto General Hospital

adult thalassemia clinicBy Stefanie Polsinelli

10

Bowling for ThalassemiaThe TFC’s most successful third-

party fundraiser offers guests anotherfun and inspiring day

By Fame Risorto and Lisa D’Annunzio13

2nd Annual Pig RoastThe Simoes family opens its doors –and barbeque! – once again, for a

good causeBy Fame Risorto

13

ThalaVisionFall2012Newsltr6:Layout 1 13-02-14 11:54 AM

BOARD OF THETHALASSEMIA FOUNDATION

OF CANADA

EXECUTIVE DIRECTORSPRESIDENTRiyad Elbard

IMMEDIATE PAST PRESIDENTTony Marra

VICE-PRESIDENTSilvia Livia

TREASURERChristina Marra

SECRETARYMohamed Hasham

TRUSTEESBessie CalabriaTony Falcitelli

Stefanie PolsinelliAmedeo SalituroEnzo Salituro

Alfonso SinagugliaMary SiomisTony TsaoHelen Ziavras

BOARD MEMBERS

Josie CumboNational President,

Order Sons of Italy of CanadaDr. Douglas Templeton

University Health NetworkChair, Medical Advisory Board

Angela CovatoCoordinator,

Medical Advisory Board

CHAPTERSAnita AimolaPresident

Guelph Chapter

THALAVISIONEDITOR

Stefanie PolsinelliDESIGN & LAYOUT

Brian Boyd

CONTRIBUTORSAnita AimolaTony FalcitelliHafsa HafsaJohn PrincipatoFame RisortoEnza Salituro

Dr. Farzana SayaniHelen Ziazras

Print and Production ofThalaVision donated byBasset Direct and

Signature Bindery Services

2

President’s MessagePositive news is always welcome! This is especially true regarding

improving patient access to new treatments. Early in October 2012, HealthMinister Leona Aglukkaq made an announcement that provides new hope tothe estimated 2.8 million Canadians living with rare disorders. Health

Canada is moving forward on creating a framework for “orphan drugs” with the goal ofproviding information and timelier access to the appropriate medication for those diagnosedwith a rare disease. Along with potentially opening the doors to new and better treatments,the government has launched a comprehensive database called Orphanet – to provideinformation and services for rare diseases.

I congratulate Canadian Organization for Rare Disorders (CORD), its president Dr.Durhane Wong-Reiger, and all those who worked hard and contributed efforts towardsthis achievement.

I am hopeful that this will pave the way for access to better treatments and newinventions for thalassemia patients across Canada. It is a sad reality that Canada lagsbehind many other countries on access to iron chelation therapies and comprehensivecare programs. The bigger challenge facing thalassemia patients today is not adherenceto treatments, but rather, access to optimal care and management of life changes – suchas transitioning from pediatric to adult care.

The Thalassemia Foundation of Canada’s collaboration with CORD, Network ofRare Blood Disorders, and the Sickle Cell community reinforces the joint advocacyefforts towards improving care for thalassemia patients and other patient groupsfighting for the same goals – such as timelier access to new treatments, comprehensivecare programs, and improving overall patient care.

Our participation on the various committees of Canadian Blood Services fordialogue and discussions on blood safety and supply issues ensures that concerns ofthalassemia patients are heard. Also, our participation in consultation meetings onhealth care reforms hosted by the Canadian Medical Association provides a voice forthalassemia patients on the future of health care.

Last spring, the Foundation introduced the Thalassemia Secondary StudentExcellence Award to motivate and encourage thalassemia patients to continue to workthrough life’s challenges, contribute to their community, and share their talents and giftswith others. The purpose of this award is to recognize thalassemia patients whodemonstrate determination, commitment, and enthusiasm. This award program will alsoenhance the Foundation’s focus on engaging younger patients and new volunteers to leadthe future of our organization.

As we carry on with our activities in the coming years, moving towards a better futurefor thalassemia patients, the outlook is very optimistic from a medical aspect – more sosince the recent strides in gene therapy research. The Foundation’s fundraising campaignsand educational events have been very successful in achieving their desired outcomes. Weare forever indebted to our many volunteers who have dedicated their time and tirelessefforts over the years, and to the donors who continue to support our cause so generously.

Riyad ElbardPresident, Thalassemia Foundation of Canada


Winter 2012-13 3

By Riyad Elbard, Treasurer,Thalassaemia International Federation

Thalassaemia International Federation (TIF) marked amajor milestone in 2012 as it celebrated its 25thanniversary. The organization was created in 1987 at ameeting in Milan, Italy, by a small group ofdedicated individuals from Cyprus, Italy, Greece,Pakistan, the United Kingdom, and the UnitedStates, who chose to commit their time andcollaborate efforts on fighting thalassemia, arare blood disorder that was thought of as afatal childhood disease at the time.

It is a great achievement that, today, TIF isrecognized worldwide as a patient-drivenorganization, works in official relations withthe World Health Organization (WHO), andcontributes in many European andInternational patient forums. The numerouspublications TIF has distributed over the yearshave been read by patients, parents, doctors, alliedhealth teams, and health authorities around the globe;these publications are instrumental educational tools that arereferenced for treatment guidelines and clinical management ofthalassemia and related complications.

Mr. Panos Englezos, President of TIF, has been the solidfoundation of the organization for the past 25 years and hascontributed tremendously to it – from his charismatic andinfluential leadership to TIF’s successes in achieving itsremarkable goals. Mr. George Constantinou (UK) and Mr.Robert Ficarra (USA) are two founding members of TIF alongwith Mr. Englezos (Cyprus), and they have been active andcontributing members of the organization’s Board since itsinception 25 years ago. Recognition must also be given to all ofthe current and past TIF Board members who have workeddiligently as a united team over the years for the benefit of TIF,and thus, the benefit of thalassemia patients worldwide. Theirtremendous efforts, dedication, and commitment deserve thehighest respect and appreciation.

A celebration of the 25-year anniversary was held during thecourse of the 3rd Pan-European Conference onHaemoglobinopathies and Rare Anaemias held in Limassol,Cyprus, from October 24 to 26, 2012. Held under the auspicesof the Cyprus Presidency of the Council of the European Union,and with the support and close collaboration of the CyprusMinistry of Health, the conference was a gathering ofstakeholders from the 27 Member States of the EuropeanUnion, as well as from other countries that are Member Statesof the Council of Europe, and from neighboring countries, to

discuss avenues of action to tackle the growing publichealth burden of chronic and rare diseases in the Europeanregion of the World Health Organization (WHO).

Considerable focus has been given to the eventsthat took place in the context of the conference inCyprus. Important resolutions and messages werelaunched at the event that would promotesignificant control policies in Europe.Participants agreed that both the scientific andpatient programmes were well constructedand balanced, and the great involvement ofpatients in the whole process was verymuch appreciated by everyone involved.

TIF’s regional and internationalconferences have always been among itsmajor activities to promote awareness onthalassemia and to educate both the patientand medical communities. From February 8

to 10, 2012, TIF held its first Pan-AsianConference on Haemoglobinopathies at the Royal

Orchid Sheraton Hotel & Towers in Bangkok,Thailand. The conference gathered 32 prominent speakers fromAsia and other parts of the globe, and over 280 otherparticipants from 25 countries (mostly from South East Asiaand the Western Pacific regions). Participants included Ministryof Health officials, WHO country representatives, medicalspecialists, scientists, various health professionals, and manypatients and parents. It was the first time that such a largescientific gathering was held for the cause ofhemoglobinopathies in the South East Asian/West Pacificregion, and it was a huge success.

The conference was held during a time of genuineinternational commitment towards a better future for patientswith the many different forms of thalassemia and otherhemoglobin disorders, based on advances in medical research,but also on adopted resolutions by the World HealthOrganization.

TIF’s next major event will be the 13th InternationalConference on Thalassaemia and Hemoglobinopathies and the15th TIF International Conference for Patients and Parents,which will be held at the Abu Dhabi National Exhibition Centrein Abu Dhabi, in the United Arab Emirates, from October 19 to23, 2013, under the auspices of Her Highness Sheikha SheikhaBint Saif Al Nahyan. The event promises to have a great impacton educating both the medical and patient communities toenforce equal access and excellence in the treatment ofthalassemia and other hemoglobinopathies in the Middle-Eastregion and worldwide. (Continued on page 4)

UPDATE – Thalassaemia International Federation

Thalassaemia International Federation: 25 Years of Contribution


(TIF Update continued from Page 3)

The conference will include thepresentation of the first Sultan BinKhalifa International Thalassemia Awardto individuals, researchers, centres, andpatients who have excelled in their workand contributions in the field ofthalassemia.

All conference publications –including programs, presentations,abstracts, resolutions, and press releases– and other relevant information can befound on TIF’s website dedicated toconferences, which can be accessed atwww.tif-conference.com.

TIF’s efforts in its goal to spreadknowledge are not limited to hostingeducational events. The organizationrecently announced the launch andimminent distribution of five importantpublications:

Guidelines for the Management of Thalassaemia Intermedia

Guidelines for Non Transfusion Dependent Thalassaemias

Thalassaemia Guidelines for Acute Complications

White Book on the Criteria for Reference Centres and Networks for Hb Disorders and Rare Anaemias

Nurses Guidelines

To learn more about TIF and toregister as a member, or for frequentupdates on TIF activities and/or toreceive copies of TIF’s news magazine,you are encouraged to visit theorganization’s website atwww.thalassaemia.org.cy.

4

The Corrado Falcitelli

Scholarship Award

By Tony Falcittelli and Hafsa Hafsa

There were many strong candidates who applied for the 2012 Corrado FalcitelliMemorial Scholarship Award. Daniel Maiorano was chosen as the award recipientand received $2,000 towards his university tuition. He is currently registered inthe Bachelor of Applied Technology program at George Brown College.

2012 Secondary Student Excellence Award

This year, a new award was introduced for secondary students. The purpose ofthis award is to recognize thalassemia patients who demonstrate determination,commitment, and enthusiasm. These qualities can be revealed through thecandidates’ academic achievements, extracurricular activities, and volunteerwork. The 2012 Secondary Student Excellence Award recipient was Hafsa Hafsa,and she was granted $500. Hafsa completed her high school diploma and iscurrently registered in the Bachelor of Commerce program at Ryerson University.

The Thalassemia Foundation of Canada and the Falcitelli family congratulateboth winners and wish them success in their education and future goals.

Secondary and post-secondary students are encouraged to apply for theirrespective award for 2013. (Application forms can be found atwww.thalassemia.ca.) The application due date for both awards is January 31,2013. Best of luck to all candidates!

Hafsa Hafsa shares with ThalaVision her thoughts on winning the 2012Secondary Student Excellence Award, living with thalassemia, and the importanceof inspiring younger generations:

Having thalassemia does not stop me from doing what I want or wish to do. Ihave never let my disease interfere with my education; in fact, I have foundmyself to be even more dedicated. I have always aspired to become a charteredaccountant, and my first year at Ryerson is the first step towards achieving mygoal. Moreover, the reason why I applied for the scholarship was because Iwanted to feel the sense of accomplishment. The money does not matter to me somuch; what matters is to be recognized as a winner. Since this is not the onlyscholarship that I have received – I also got a scholarship for maintaining a highaverage throughout high school – I am planning on contributing the entire amounttowards my tuition fee. Therefore, I feel much relieved!

I think that the younger generation should recognize its potential, as everyoneis capable of achieving something. Just remember that thalassemia cannot stop usfrom achieving what we desire; let’s not even consider it an illness! All you needto do is set a goal and begin your journey towards it. Also, we all need to set anexample for the coming generations, so that no one is left behind. And our firststep could be to get involved with the Thalassemia Foundation of Canada in anyway possible; for example, we can create a blog with inspirational writings, or usethe Foundation’s Twitter account to answer any career/education-relatedquestions.


5

Therelationship betweenmarkers of ironload, iron-associatedoxidative damage,and metaboliteprofiles in ironoverloadedthalassemia patients.By Dr. Farzana Sayani

Thalassemia is associated withtransfusion related iron overload. Theiron accumulates in organs including theliver, heart, pancreas and other endocrineorgans and leads to variouscomplications. In iron-overload, the freenon-transferrin bound iron (NTBI) istoxic and leads to formation of freeradicals that contribute to oxidative stressand damage to lipids, proteins and DNA.The oxidative damage eventually leads tocell death, and subsequent organdysfunction. Current management of ironoverload involves identifying the amountof iron in various organs including theliver and heart. This information issubsequently used to adjust chelation

therapyto reduce

iron levelsand thus reduce

damage to organs.

Current methodsto measure iron load

include serum ferritin, liver MRIto measure the liver iron content,and cardiac MRI to measurecardiac iron load. These tools arevery helpful and have allowedclinicians to tailor chelationtreatment and have resulted inimprovement in patient care andsurvival. However, these methodsof detecting iron load havelimitations. By the timesignificant iron load is seen onMRI, cell damage from toxic ironis already long underway. Newmethods that allow us to identifyearlier signs of iron damage mayenable clinicians to startchelation sooner, or makechanges in treatment beforesignificant changes are seen onthe MRI. These methods mayhave the potential to improveorgan function and patient survival.

One such potential new tool ismetabolomics. Metabolomics is arelatively new discipline which involvesthe study of biochemical products of

metabolism called metabolites. Thesemetabolites are the byproducts of manydifferent interactions between genes andproteins in the body. Metabolomics is ananalytical tool that can identifythousands of different metabolites in asample. It has been used in variousdiseases, including heart disease,arthritis, and cancer, to identifybiomarkers related to diagnosis,predicting prognosis, and following theefficacy or toxicity of therapy.Metabolomics analysis is advantageoussince it can be done on any body fluid(including blood), is non-invasive, and isrelatively inexpensive.

Our team – consisting of me, NiloufarAbdolmohammadi (summer researchstudent), Maggy Zhang (lab technician),and Dr. Aalim Weljie (metabolomicsstudies) – sought to use metabolomicstechnologies to determine if it canidentify unique metabolite profiles iniron-overloaded thalassemia patients. Wealso sought to determine if thesemetabolite profiles could predict for ironload, serum ferritin, liver iron, cardiaciron load, and oxidative damage.

In this pilot study, 12 thalassemiapatients and 12 control individuals wereenrolled. Blood and urine samples werecollected at baseline (Continued on page 6)

Each year, the Thalassemia Foundation of Canada (TFC) conductsan application and selection process and awards grants todoctors who are working on studies that either directly orindirectly relate to the treatment or curing of thalassemia.The TFC approached various grant recipients for anupdate on their study: for this issue, ThalaVision ispleased to share news from Dr. Farzana Sayani, ofthe University of Calgary, who was the recipientof a two-year grant in 2011.

Grant Competition Update

These methods mayhave the potential toimprove organ functionand patient survival.

“ “

Dr. Farzana Sayani


(Continued from page 5) and every sixmonths for one year. Thalassemia patientsalso underwent routine investigations for ironmonitoring including serum ferritin, and liverand cardiac MRI, as per standard practice.The samples were analyzed usinggas-chromatography/mass spectrometry andmetabolomics technologies.

Using metabolomics technologies, wewere able to show that iron overloadedthalassemia patients have different changes intheir metabolites and metabolism comparedto normal individuals. Unique metaboliteprofiles were seen in the differentthalassemia forms (thalassemia major,thalassemia intermedia, and Hemoglobin Hdisease). The different chelators also gaveunique metabolite patterns. Moreinterestingly, the results also suggested thatdifferent metabolite profiles may allow us topredict iron load. Different metaboliteprofiles were seen for high ferritin, high liveriron, and high cardiac iron. Differentmetabolite profiles may also have thepotential to predict for iron-related oxidativedamage of lipids and DNA as measured bymalondialdehyde (MDA) and 8-hydroxy-2’-deoxygaunosine (8-OHdG) levels.

These preliminary results are veryinteresting and exciting, and are the firstreport of the use of metabolomicstechnologies to further study iron overloadand thalassemia. These metabolite profilesmay have the potential to serve as biomarkersof iron load and iron-related damage inthalassemia patients. In addition, this maypotentially allow for earlier treatmentintervention. Further data analysis to assessfor changes in metabolite profiles over a oneyear period is underway. These preliminaryresults are encouraging. Future goals are toexpand this project to enroll more patients ina multicenter study.

I would like to thank the ThalassemiaFoundation of Canada for its support infunding this research project. A big thankyou also goes to the patients and staff at theSouthern Alberta Rare Blood and BleedingDisorders Comprehensive Care Program atthe Foothills Medical Centre in Calgary fortheir enthusiasm, participation, and supportfor this project.

6

THE MISSION OF THETHALASSEMIA FOUNDATIONOF CANADA

To support and fund thalassemia scientificresearch, treatment, patient services, publicawareness and education.

OUR GOALS

To provide patients and caregivers withaccurate and up-to-date information onthalassemia research and treatment.

To help patients navigate through thehealth care system, while providingbeneficial resources and support servicesto the thalassemia community.

To further research and innovation inthalassemia treatment and care.

A CURE REMAINS TO BE FOUND

Thalassemia is a lifelong condition thatpresents many unique challenges. Thephysical demands of the disease and theongoing medical treatment needed for itcan take a toll on patients and families,causing emotional distress and impactingthe overall effectiveness of treatment,survival and quality of life.

A cure needs to be found. Please do yourpart. Donate today.

THALASSEMIA FOUNDATION OF CANADA

340 Falstaff Avenue, Suite 204

North York, Ontario, M6L 2E8

Tel: 416.242.THAL (8425)

[email protected] thalassemia.ca


Winter 2012-13 7

Thalassemia (derived from thalassa andanaemia, Greek for "sea" and "lack ofblood,” respectively) is a genetic blooddisease, also known as Cooley's anemia, orMediterranean anemia. People bornwith this disorder cannot makenormal hemoglobin, which isneeded to produce healthy red bloodcells.

WHO CARRIES THALASSEMIA?

Thalassemia is most often foundin people of Chinese, South Asian,Mediterranean, Middle Eastern, orAfrican origin.

WHAT IS THALASSEMIA MAJOR?

In thalassemia major, red bloodcells are destroyed almost as soon asthey are produced, and the bonemarrow cannot produce a sufficientnumber to replace them. Childrenborn with thalassemia major usuallydevelop the symptoms of severeanemia within the first year of life.Lacking the ability to producenormal adult hemoglobin, thosewith thalassemia major experiencechronic fatigue, paleness, jaundice andslower growth development. Prolongedanemia will cause bone deformities andeventually lead to death within the firstdecade of life. The only treatment tocombat severe anemia is regular bloodtransfusions and iron chelation.

WHAT IS THALASSEMIA INTERMEDIA?

Thalassemia intermedia is caused byone of the more severe thalassemic genescombined with a milder thalassemicgene. Children and adults living withthalassemia intermedia are moderatelyanemic but many patients survivewithout regular blood transfusions.

WHAT IS THALASSEMIA MINOR?

People with a thalassemia mutation inone gene only are known as carriers or aresaid to have thalassemia minor.

Thalassemia minor results in no anemia orvery slight anemia. People who are carriersdo not require blood transfusions or irontherapy, unless proven to be iron deficient.

HOW CAN THALASSEMIA BE TREATED?

Regular blood transfusions allowpatients with thalassemia to grownormally and be active. Unfortunately,transfusions result in excess iron in thebody. Excess iron in vital organsincreases the risk for liver disease, heart,endocrine and spleen complications,diabetes, osteoarthritis and osteoporosis– to name just a few. In some cases, itcan also lead to premature death.

Today, iron chelators (drugs designed toremove excess iron) have significantlychanged the prognosis of thalassemia.Patients can grow and develop normally,with relatively normal heart and liverfunctions. Patients are living longer andhaving families of their own. Medicaladvances continue to improve the lifeexpectancy and quality of life for thoseliving with thalassemia. Treatments that

are especially promising for the futureinclude gene therapy, bone marrowtransplants (in which donor bone marrowis inserted into the patient's bones and

begins producing normal, healthyblood cells) and cord bloodtransplants (in which stem cellsrather than bone marrow cells areused in the procedure).

DO YOU CARRY THALASSEMIA?

Many people from the areas ofthe world where thalassemia iscommon have thalassemia minor.Checking for thalassemia requires aspecial blood test, calledHEMOGLOBINELECTROPHORESIS, which youmust request from your doctor. Thistest can identify a carrier ofthalassemia. If you, your parents orancestors are from an area of theworld where thalassemia iscommon, PLEASE REQUEST ahemoglobin electrophoresis bloodtest from your doctor. It isimportant to identify yourself as a

possible carrier of thalassemia. Carriershave a one in four (25%) chance withevery pregnancy of having a baby withthalassemia major if his/her mate alsohas thalassemia minor.

HOW DO YOU INHERIT THALASSEMIA?

Thalassemia is an inherited geneticdisease. It is not transmitted throughblood, air or water. It cannot be causedby poor nutrition or medical conditions.If both parents carry thalassemia minortheir children may have thalassemiaminor, they may have completely normalblood or they may have thalassemiamajor. In each pregnancy there is a onein four (25%) chance that their child willhave thalassemia major, a two in four(50%) chance that the child will havethalassemia minor and a one in four(25%) chance that the child will havenormal blood (see Diagram).

The combination of one gene from the mother and one from the fatherleads to three different types of thalassemia: thalassemia major,thalassemia intermedia or thalassemia minor

A Parent withThalassemia Minor

Thalassemia Major/lntermedia

ThalassemiaMinor

NormalBlood

A Parent withThalassemia Minor

ThalassemiaMinor

What isThalassemia?ThalaVisionFall2012Newsltr6:Layout 1 13-02-14 11:55 AM

8

ThalaVision is pleased to introduce anew section in the newsletter: Donor Corner

will highlight a different individual each issuewho has donated a lot of his/her time and

exerted extraordinary effort to raise awarenessand funds on behalf of the Thalassemia

Foundation of Canada. These people exemplify themeaning of hard work, fearlessness, and dedication

to a common cause that not only unites a group,but also makes it possible to move forward and

achieve set goals and plan for new ones.

One such person, and the first to be featured in DonorCorner, is Anita Aimola, a thalassemia major patient from

Guelph, Ontario. Anita is a “Thalassemia Hero” inevery sense of the term. Not only has she displayed a

tremendous amount of courage and strength in overcoming anumber of obstacles

affecting herhealth,

but

she also finds the time to help others in need, and hasdedicated many years to raising much-needed funds for theThalassemia Foundation of Canada (TFC). For the last 18 years,Anita has spearheaded an annual dinner dance fundraiser in herhometown: she and her committee have raised approximately$190,000 for the TFC. “It’s important to fundraise, but what’smore important is just being there for others,” says Anita.“[Having] thalassemia has been difficult... but it has given mestrength, courage and hope.” The TFC congratulates everyoneinvolved in the dance for an impressive history of charitablework, and thanks them for their hard work and dedication to theFoundation’s cause. Their efforts are very much needed andappreciated.

For those who have a chronic condition, there’s no denyingthat it affects your life. But how much you allow it to determinethe quality of your life depends, to some extent, on the way you

choose to live day by day. Anita hasnever allowed the challenges she’sfaced to affect her quality of life:her enthusiasm and strong spirithave always guided her, allowingher to move forward and accomplishthe goals she sets out for herself.When you first meet Anita youcannot help but be drawn to herwarm and friendly personality. Shewas kind enough to spend sometime with ThalaVision and sharewith our readers a little bit moreabout herself, her life with

thalassemia, and whatinspires her every

day.

A Spotlight on Anita Aimola By Helen Ziavras and Anita Aimola

CORNER

DONOR

Myname isAnita Aimola.I’m 41 years old and I havethalassemia major. I was born andraised in Guelph, the eldest of two siblings:my younger brother also has thalassemia.Both my parents were born in Italy, so weinherited the “wonderful” thalassemia trait.Growing up in an Italian home was veryspecial, because we were always surroundedby family and friends. Not only did thesepeople pass on their stories and traditions,but there was also always a lot of good foodon offer. (This is probably why I love Italyso much, too.)

Thalassemia affected my life from the beginning. I remember being ayoung girl and going to the hospital in Guelph for my transfusions. Thisstopped when I was about eight years old because I developedantibodies in my blood. I just remember feeling very tired – probablybecause the antibodies lowered my hemoglobin so drastically. Doctorstold my parents that I would no longer be transfused because my bodywouldn’t accept anyone else’s blood. Since this happened in 1979, and atthat time there was no other treatment available, the doctors didn’tthink I would make it past the age of 10. Well, I guess they were wrong.I managed to live my teenage years with a lower hemoglobin. Igraduated from high school, and was working towards becoming afloral designer.

Unfortunately, around 1991, my hemoglobin levels lowered evenmore, affecting my bone marrow and my optic canal. (The bonemarrow pressed on the optic nerve, causing me to lose a good part ofmy sight.) The doctors declared me legally blind. Let’s just say, that wasthe worst day of my life! I not only lost my sight, but I also lost the littleconfidence and independence that I had. Then I met Dr. Olivieri, fromToronto, who basically brought me back to life. She was doing a studywith a new treatment called Butyrate and thought I was the perfect

candidate for it. Long story short, both Iand my brother are successful participants of theButyrate study, and my hemoglobin is finally at ahealthy level.

When I was asked what inspired me to start fundraising for theThalassemia Foundation of Canada, I didn’t know what to say, otherthan that it just happened. A few of my friends were planning a fashionshow and decided to donate the proceeds to the TFC. It was a bigsuccess and other friends said they wanted to help, so it snowballed intoa great fundraising dinner dance. Even though a lot of work goes intoplanning it (for which I have to give credit to the girls on the eventcommittee) it’s definitely worth it. It’s been amazing to see how muchsupport we’ve been given through the years from donors and familiesattending our event. March 2013 will mark the 19th year we’ve held theevent, and every year it just keeps getting better.

Through the years, coping with thalassemia has been very difficult,as other patients would know: everyone has their own circumstances todeal with. For me, it’s been a definite struggle – especially losing mysight. On the other hand, it’s made me stronger and filled me withhope. And I’m also extremely grateful for the blessings of many special

Angela Costa, Anita Aimola, Shamoun Kherati


AND BEYOND

Winter 2012-13 9

My Experience LivingWith ThalassemiaInterviewer: What is it like living with thalassemia in your 40s?

John: I haven’t really noticed many things that are different than in my 30s,

20s, etc. I have slowed down a bit but I think that comes to all of us as we

age. I am happy that I have my health still and not too many complications

to manage.

Interviewer: How do you cope with challenges?

John: Staying positive ALL THE TIME. Compliance of

treatments and living a healthy lifestyle. I try to set one goal

for each year then work to achieve it (e.g. to eat healthier

or start exercising regularly, etc.).

Interviewer: What are your accomplishments?

John: I’ve been married 18 years, and have a beautiful wife,

four great kids, and two dogs. I just completed my degree in

nursing (BScN). I’ve had my diploma in nursing since 1986, and

have worked as a nurse since then (so 25+ years now). I’m

currently a Nurse Educator. I’m also a hockey trainer for my

two boys’ hockey teams. I own a 1967 Camaro convertible. In

seven years I will reach retirement age – who would have

thought thalassemia patients would come this far?!

Interviewer: Do you have any suggestions to offer to other thalassemia patients?

John: Stay positive all the time – it’s not worth being miserable. Regardless of

illness, life really is too short. Be compliant with your treatment(s); it will

determine how well you do health-wise. No matter what, family

always comes first, which means that if you want to be around

for them, you really have to put your health right up there

with family. Have no regrets.

At its annual Patient and Family Conference in June 2012, the Cooley’s AnemiaFoundation (a US-wide organization) honoured individuals with thalassemia who hadreached a very special benchmark: they had passed their 50th birthday. Sixty-fourindividuals were honoured.

The genetic blood disorder thalassemia was originally considered a pediatric disorder;however, with tremendous advances in care in the past decades, more and more patientshave lived into adulthood, with many starting families of their own – a situation which wasundreamed of before the advent of iron chelation therapy in the 1970s.

Patients living into their 50s and beyond is just the latest sign that advances in careare having a profound impact on the lives of all with thalassemia, proving that withproper care, people with thalassemia can live fuller, healthier and longer lives.

AND BEYOND

friendsthat I’ve metthrough the years.Many of these friendshipshave been with other patients andtheir families, since they betterunderstand what I’m going through. It‘simportant to be there for others and toalso have that support.

Take care and keep well,

Anita

5050ByJohnPrincipato


Over the last little while, the adultthalassemia clinic at Toronto GeneralHospital (TGH) has seen a number ofstaff changes. ThalaVision would like tointroduce its readers to the newestmembers of the TGH family. For thisissue, ThalaVision sits down for a chatwith Colleen Johnson, one of the twonew Nurse Practitioners who have beenworking in the Red Blood Cell DisordersClinic since March 2012.

Colleen, what does your positionentail, exactly?

Nurse Practitioners in the clinic areresponsible for the 400-500 thalassemia,sickle cell and various other red bloodcell disorders patients. On a day-to-daybasis, we review patients receiving bloodor other treatment in the medical dayunit, as well as see patients up in theclinic on the 12th floor. We also have toreturn telephone calls and emails frompatients. The other part of our job is tolook at ways to improve the Red BloodCell Disorders Program.

Tell us a bit about yourself and howyou came to be working in thethalassemia clinic.

I came to work at the Red Blood CellDisorders Program after 20 years ofexperience in oncology and palliativecare. My last job was at Trillium HealthCentre in Mississauga. Before that Iworked for many years at PrincessMargaret Hospital. I was looking for a“shake-up” in my career and decided tomake the leap into a new specialtyarea. It has really been a challenge inmany ways but I am happy to be at adowntown teaching hospital again.

What were your thoughts on theclinic and the patients when you firststarted working there?

When I first started working at theclinic I was very overwhelmed by thechange. I was an expert in cancertreatments and guiding patients throughthe cancer journey, but brand new tothalassemia and sickle cell patients. Itwas hard to be a novice nurse again in aclinical area in which I had neverworked. At first, I found the thalassemiapatients welcoming but sceptical aboutanother change in staff. As the monthshave passed, I feel like I am starting todevelop good relationships withpatients.

What are some good/unique aspectsto the clinic and what do you thinkcould be improved upon?

I really enjoy seeing the relationshipsthat some patients have developed witheach other as well as with the day unitnursing and clerical staff. I always needto remind myself that I am the newcomerand that I need to “learn the ropes” fromthe patients and staff: textbook learningcannot replace hands-on clinical work.

What are you personally hoping tobring to the clinic?

Working with oncology patients hastaught me to listen and try to understandthe patient experience. I really hope I canbring those skills to working with thispopulation of patients with red blood celldisorders. This will take time and I hopeothers will continue to have patiencewith me.

What do you hope to see in thefuture – in the clinic, with patients,etc.?

I really feel like I am too new to thisclinic to have aspirations for futurechanges to the clinic. I am still trying tobecome clinically strong. Ask me thisquestion again in one year!

You have the patients’ attention nowwith this interview: what is one thingyou really want to impart to them?

I want patients to understand that thevolume of patients we deal with is veryhigh. When I don’t remember somethingthat was discussed last month pleasedon’t get offended or think I do notcare. I ask that patients bear with me as Iam trying to learn the journey of patientswith all red blood cell disorders so that Ican better do my job to support them.

10

I really enjoy seeingthe relationships that somepatients have developedwith each other as well aswith the day unit nursingand clerical staff.

“

“


Winter 2012-13

(Continued from front cover) other healthy snacks, all donated bySurve Construction. Powerline’s deejay made the day even morememorable, as children and teens enjoyed the latest Top40 tuneswhile mingling with family and friends within thecommunity. Passersby stopped by the meeting area to inquireabout our cause: local student volunteers welcomed everyone andpassed out informational brochures and pins promoting theThalassemia Foundation of Canada. The walk-a-thon not only actsas a fundraiser for the Foundation, but also helps raise awarenessof thalassemia and the Foundation in the broader community.

Participants in the walk showed incredible determination to

raise as much money as possible, soliciting friends and relativesto support their cause. The Thalassemia Foundation of Canadais extremely grateful to everyone who participated in the walkand who donated funds. Big thanks also go out to the organizersof the event, as well as all of the companies and individualswho donated goods and services to the event. The event cannottake place without your generosity.

We’re aiming to make the walk-a-thon a yearly event. Wehope you will be able to join us May 5, 2013, for the thirdannual Walk-for-Thalassemia! Stay tuned towww.thalassemia.ca for full details on the upcoming event.

Student volunteers get ready to hand out the freshly made popcorn donated byLiUNA – Local 506.

Clockwise from top left: TFC supporters Francesca Sallati, Mario Sallati, EnzoPassarelli, Julia Sallati, and Christopher Sallati are all smiles after the walk.

Participants, volunteers, and TFC Board members proudly show off their new shirts.

11


12

The Roma Fence Group of Companies 16th Annual GolfInvitational, in support of the Thalassemia Foundation of Canada(TFC), took place on August 29, 2012, at the Board of TradeCountry Club in Woodbridge, Ontario.

At the event, golfers enjoy a fun-filled day of 18 holes ofgolf, a pre-game lunch, a post-game deluxe dinner, and thechance to win incredible prizes.

This year’s event saw 128 golfers enjoy the pre-gameporchetta lunch and play the course; approximately 150 guestsattended the post-game dinner, which took place atMontecassino Place Woodbridge. Thanks to everyone involved,

the event raised over $13,000 for the TFC, which providessupport to thalassemia patients and their families, and helps fundresearch on treatments – and ultimately, a cure – for the disease.

We look forward to the 2013 golf invitational on August 28,and hope to see you there! For further details on the event, visitwww.thalassemia.ca.

Roma Fence and the TFC wish to thank everyone who tookpart in this year’s golf tournament, especially the generoussponsors and contributors of the event.

ROMA FENCE G LF

Acculink Fence & Wire Inc.

Advanced Enry Systems of

Canada

Anscon Contracting Ltd

ApoPharma Inc.

Ber-Cool Ltd.

Bolton Electric

Bolton Steel Tube

Cambridge Canvas

Colourific Coatings

Custom Compactors

Daily Commercial News

Del Metals

Duracrete Concrete Fence

Products

Falco Steel Fabricators

Fernview Construction

Hantec Solutions

Kon-Strutt Construction

Leone Fence

Masters Insurance

Mircom/Gardia

Multitube Inc.

Platinum Printing Group

Powell Contracting

Pro-Star Excavating &

Grading

Rocky River Construction

Ltd.

Roma Fence Ltd.

Sevenview Chrysler

The Falcitelli Family

The Fence People

York Disposal Services

Aldo Rea

Alliance Creative

Marketing

Amedeo Salituro

Andy Scandolari

ApoPharma Inc.

Benny Zhou

Ber-Cool Ltd.

Bidders Choice Sales

ClubLink Corporation

Daily Commercial News

DiMondo Consiglio Law

Firm

Geographics Co. Inc.

Gino & Tony Falcitelli

Gino Varone

Jean Drouin

Joseph Schiraldi

Kon-Strutt Construction

Liza Tam

Medallion Fence

Mike & Silvia Livia

Montecassino Place

Woodbridge

Nick Consiglio

Peninsula Construction

Robert Elias

Roma Fence Ltd.

Sid Isenberg

Steelguard Fence Ltd.


The Fence People

TLN Telelatino

Tony Marra

Woodbridge International

Golf (& Social Club)

2012 Hole Sponsors 2012 Contributors

I N V I T A T I O N A L


Winter 2012-13 13

BOWLINGFOR THALASSEMIA By Fame Risorto and Lisa D’Annunzio

On June 22, 2012, we held our third annual Bowling for Thalassemia fundraiser. Weare pleased to report that through the support and efforts of our relatives and friendswho came out in record numbers, we raised $12,600.

Inspired by thalassemia patient Marco Risorto, the bowling events have raised over$33,000 to date for the Thalassemia Foundation of Canada. We would like to thankeveryone who attended this year’s event, which was held in support of a great cause.This fun event is making a difference in our mission to find a cure for thalassemia.

The bowling fundraiser was held at NEBs Funworld in Oshawa. There is somethingfor everyone at NEBs – the world’s largest 5-pin bowling centre – and it helped makethe bowling event a great outing for the entire family. As in previous years, the “Rock‘n Bowl” was a major attraction, and kept the energy pumping for everyone. Asidefrom bowling, the night’s activities also included a silent auction, numerous raffledraws with great prizes, and a snack table full of delicious homemade food.

We will continue our efforts to promote and expand Bowling forThalassemia; with the interest the event has garnered thus far, we’re sure

to succeed! We look forward to seeing you inJune 2013 for our next event – stay tuned to

www.thalassemia.ca for furtherdetails.

2nd Annual

to Support ThalassemiaPIG ROASTPIG ROAST

By Fame Risorto

On August 11, 2012, Roger and Susan Simoes hosted their 2nd Annual Pig Roast toSupport Thalassemia. The Simoes once again extended their beautiful home and hearts tohelp prepare this wonderful event.

The day in Bradford, Ontario, started off with grey skies, but clearedup just in time to hold the event. Approximately 100 people braved theuncertain weather to attend the event, and with everyone’sgenerosity, over $3,300 was raised in support of theThalassemia Foundation of Canada and the search to find acure for t halassemia! The day was filled with great food,great fun, and dear friends – what more can anyone ask for?

Warm thanks are extended to the many residents and local businesses ofBradford who donated food and supplies to ensure the success of the event. Specialmention must be made for John and Linda Hodgson, Portugalia Bakery, Sargeant’sRentals, and IAGO Construction.

Fame, John, Jonathan and Marco Risorto extend heartfelt thanks to treasured friendsRoger and Susan Simoes, and Jose and Alvaro Da Silva. Here’s to many more pig roasts!

TFC Board member Bessie Calabria presents LisaD’Annunzio with the Appreciation Award(announced at the 2012 Valentine’s gala).


14

A Glitter of Hope

Acadian Driveaway

ApoPharma

Aquarius Men’s Wear

Avante Property Services

Beneplan Inc. BenefitsManagement

BMW Toronto

Sam & Bessie Calabria

Cindy Di Nino

Dino & Antonietta Di Nino

Eastern Power Ltd.

Sam & Dina Falcitelli

Tony & Gino Falcitelli

Philip & Dolores Franco

Masters Insurance

Order Sons of Italy

Order Sons of Italy(All Lodges)

Order Sons of ItalyGrand Lodge

Pasquale’s Trattoria

Prestige Land Maintenance

Rainbow Florist

Remo Ferri Group of Automobiles

Roma Fence Ltd.

San Antonio Fish Market

Signature Bindery

Signaturephotobooks.com

Supreme Financial

Sam Totera

Ti Amo Decorating

Villa Charities Inc.

West Village Dental Clinic

(L-R): Silvia Livia, Alfonso Sinagulia and Riyad Elbard of the TFC Board presentJohn and Fame Risorto with the Chris Bennedson President’s Award.

John and Anna Maiorano with their son Daniel, recipient of the 2012 CorradoFalcitelli Memorial Scholarship Award.

Contributors Table Sponsors

ApoPharma Inc. (Apotex)

Avante Property Services

BMW Toronto

Sam & Bessie Calabria

Sergio & Adelina Ceccarelli

Century ElectricalContractors

Dino & Antonietta Di Nino

Cindy Di Nino

The Di Nino Family

Eastern Power Ltd.


Fazzari & Partners

Mike & Silvia Livia

Maranello Ferrari

Tony Marra

Masters Insurance

Novartis

Order Sons of Italy Canada

Ciro & Angela Polsinelli

Stefanie Polsinelli

Quinn Automotive Group

Remo Ferri Group of Automobiles

Fame & John Risorto

Roma Fence Ltd.

Amedeo & Enza Salituro

San Antonio Fish Market

Alfonso & Sandy Sinaguglia

Tony Tsao

Universal Electric Motors

Angelo & Rita Viola

Claudio Viola

Woodbridge International Golf (& Social Club)

Nick & Helen Ziavras

(Continued from front cover) was given toJohn and Fame Risorto; and a secondAppreciation Award was given to Sergioand Adelina Ceccarelli. The Foundation isgrateful to all of the recipients for theirhard work and dedication to its cause. The2012 Corrado Falcitelli MemorialScholarship Award was also handed outthat evening, to proud recipient DanielMaiorano. Thanks to the efforts of alldonors, sponsors and other supporters ofthe Valentine’s gala and the ThalassemiaFoundation of Canada, the Foundation

was able to donate $110,000 towardsthalassemia research in 2012. The chequefor this donation was presented by theBoard members at the Valentine’s dance.

During dinner, numerous door andraffle prizes were given out, and guestswere able to tour the incredible silentauction display in the lobby and bid ontheir favourite items. Another big-ticketevent of the evening was the 50/50 draw.Once the meal was over, Veriation DJServices had all the guests on their feet,

dancing to a mix of classic oldies and thelatest Top40 tunes.

The Foundation would like to thankeveryone involved in the event,especially the volunteers who gave sofreely of their time, and the donors andsponsors who continue to amaze withtheir endless generosity. Without yourhelp and support, this event – and thesuccess of the Thalassemia Foundationof Canada – would not be possible.


Winter 2012-13 15

For more information on this event, contact Christina Marra at [email protected] or 416.735.1180.

The Roma Fence Group of Companies

17th Annual Golf Invitationalis coming soon!

(Clockwise from top left): Stefanie Polsinelli, Cindy Di Nino and Bessie Calabria hand out raffle prizes; Riyad Elbard and Alfonso Sinagulia present Sergio andAdelina Ceccarelli with an Appreciation Award; The evening's guest speaker, Dr. Isaac Odame, addresses guests at the dinner dance; Members of the Falcitellifamily present Daniel Maiorano with the 2012 Corrado Falcitelli Memorial Scholarship Award.

Cardinal Golf Club2740 Davis Drive WestKettleby, ON

Shot-Gun start 1:00 p.m. Dinner to follow

Montecassino Place Woodbridge

ThalaVision is now accepting ads!Reach thousands of readers andpromote your business whilesupporting a great cause. Allproceeds from submitted ads go to

the Thalassemia Foundation ofCanada and its quest to fundthalassemia patient care andscientific research.

For ad rates, specs and deadlines,contact Stefanie Polsinelli [email protected]

The Roma Fence Group of Companies

17th Annual Golf Invitationalis coming soon!

August 28, 2013August 28, 2013


Upcoming Events andImportant Dates for 2013

19th Annual Thalassemia Foundationof Canada Guelph ChapterDinner Dance

Saturday, March 2, 2013, Guelph PlaceBanquet Hall, Guelph, Ontario

3rd Annual Walk-for-Thalassemia(celebrating InternationalThalassemia Day)

Sunday, May 5, 2013, Toronto, Ontario(Full details at www.thalassemia.ca)

Thalassemia Nurses Educational Day

Spring 2013 (Exact date and location tobe confirmed)

Roma Fence Group of Companies17th Annual Golf Invitational

Wednesday, August 28, 2013,Cardinal Golf Club, Kettleby, Ontario

18th Annual Fellowship ResearchGrant Competition

(Funding for the years 2014 to 2015)Submission deadline: Tuesday,October 15, 2013

13th International Conference onThalassaemia andHemoglobinopathies and the15th TIF International Conference forPatients and Parents

October 19-23, 2013, Abu DhabiNational Exhibition Centre, Abu Dhabi,United Arab Emirates

Dear Friend,

We are extending an invitation to you, your family members, friends and work colleaguesto become a member of our organization, Thalassemia Foundation of Canada.

For years, Thalassemia Foundation of Canada has successfully achieved its goalsthrough the tremendous dedication of its Board members and other volunteermembers, and the support of generous donations from the public. Our team ofvolunteers consists of patients and non-patients who either serve on our Board or asgeneral members; members donate their valuable time and effort toward theFoundation’s numerous activities and projects.

By becoming a member, you will assist Thalassemia Foundation of Canada incontinuing to support and fund thalassemia-based scientific research, treatment, patientservices, public awareness and education.

The benefits of becoming a member, just to name a few, include: a subscription tothe Foundation’s ThalaVision newsletter; voting rights at our Annual General Meetingheld in April 2013; access to books, brochures and information on thalassemia; anddetailed information on upcoming events and fundraisers.

In order to become a member for 2013-2014, please complete the membershipinformation on the form below and mail it, along with a $10 membership payment, tothe address noted below.

Donations along with your membership fee would be greatly appreciated. Yourdonations will bring us closer to reaching our ultimate goal of finding a cure forthalassemia.

Thank you for your support.

Alfonso SinagugliaChair, Membership Committee

MEMBERSHIP FORM

Name:

Address:

Phone:

Email:

Additional donations can be submitted along with your $10 membership payment. Thank you.

340 Falstaff Ave., Suite 204North York, ON M6L 2E8

Tel/Fax: 416.242.THAL (8425) Email: [email protected] • Website: www.thalassemia.ca

Registered Charitable # 119068492 RR 0001

Winter2013

NEWSLETTER OF THE THALASSEMIA FOUNDATION OF CANADA


23rd annual valentine’s dinner danceto 10, 2012, tif held its first pan-asian conference on...

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