Friday, April 29, 2005

Study Participants Needed

If you are a pre or post-lung transplant patient you are invited to take part in clinical trials that are part of ongoing research by the Toronto Lung Transplant research team of physicians and scientists.

Toronto General Hospital’s Lung Transplant team is currently doing research in the areas outlined below and you have an opportunity to help and further this research by taking part in the trials. Please note that study 1 is for both pre and post-lung transplant patients and studies 2 and 3 are for pre-transplant patients only.

The Toronto Lung Transplant research team is renowned as having one of the best basic lung transplant research programs in the world and is a world-leader in other studies and trials. Let’s do all we can to help the team by volunteering to participate.

Sassan Azad, Clinical Trials Coordinator, has asked me to tell you that he would very much appreciate your help and asked me to forward the following to you:

1) Largo Study:
An observational study that only involves blood work at the time of biopsies or bronch's or any other significant clinical event (Rejection or infection), the rest is routine standard of care. (For Pre- and post- lung transplant patients)
Goal: diagnosis of clinical events without doing biopsies or bronch's with just a simple blood work.

Drug studies:
2) EZ Trial:

Anti-T-Lymphocyte drug (one dose)) which is given to the patients day 1 after transplant to prevent rejection of the new lung, involves multiple blood samples after the transplant on top of the routine standard of care. (Only pre-transplant pts)
Goal: Prevention of rejection after lung transplantation

3) Repertaxin Trial:
Anti-Cytokine drug (CXCL8) (one dose) which is given to the patients at the time of transplant to prevent incidence of Lung reperfusion injury due to late graft function and early graft failure. The study again involves blood work on top of the routine standard of care.(Only pre-tx pts)
Goal: Prevention of Lung reperfusion injury.

If anyone wants to take part in any of the above clinical trials, please contact me, Sassan Azad at 416-340-4800 ext. 6224.
or Email me


Sassan Azad
Clinical Trials Coordinator
Toronto Lung Transplant Program

Toronto General Hospital (UHN)
585 University Avenue, NCSB 9N-933A
Toronto, ON, M5G 2N2
Tel. (416) 340-4800 x 6224
Fax. (416) 340-4829
Pgr. (416) 790-4532
Email

Thursday, April 28, 2005

Transplant Network News 4-28-05

IN THIS ISSUE:
1 – National Organ & Tissue Donation Awareness week
2 - Coming events
3 – Patient updates & CarePages
4 – Photo Gallery - many updates

1 - Organ & Tissue Donation Awareness
National Organ & Tissue Donor Awareness Week was officially April 17 - April 23, 2005. Activities started much earlier and are still continuing. In addition to the Trillium Gift of Life Network's major promotion of the event, many organizations like the Kidney Foundation and The Eye Bank of Canada, etc. had their own promotions. Many individuals took the initiative to promote organ and tissue donation as outlined below.

Lisa Mitton, lung transplant recipient, wrote to area newspapers and had an article published in the Guelph Mercury. Gerald Sutton wrote a friend at Q107 in Toronto and had an announcement on the air. CITY-TV in Toronto visited Gerald and family at home and did a feature on his lung transplant. Monique McTernan Black has been posting a message through her web contacts and I've included a note from her in the next paragraph. And this list goes on. See my photo journal for more details under the photo captions. Organ Donation Awareness Photos

"From Monique McTernan Black: (Moncton, NB, Canada)
Hi Merv,
Mark's in the final stages of prep for his marathon - he'll run it in Halifax on May22nd. I'll approach the media there - it'll be 26 yrs from the day that he was featured in their local paper - one of the IWK hospital "miracles"...an infant who'd survived 2 heart open heart surgeries."
(Ed. note: Mark Black received a Heart & Double-lung transplant in September, 2002. Born with a congenital heart defect, he was never able to enjoy activities that normal kids do. But now he's running marathons! What an amazing story.) Monique continues:
"I wonder how many other heart and double lung transplant patients will have completed a marathon?...I'm always looking for another way to provide education re. the need for donors and how to give consent....:) Have had great response from emails I've sent - just affirms that there's no such thing as overkill on this one:)

Here's the message I've been forwarding...

April 17th – 24th is National Organ and Tissue Donor Awareness Week. Each of us has the potential to give the “gift of life” – a gift that could impact more than 40 critically ill people.

Many Canadians have not made the decision about whether to be donors once their lives are over. There are nearly 4,000 people waiting for a life saving transplant and statistics show that more 1,000 of them will die because of a shortage or organs or tissue. Please make your decision - then tell your family your wishes. A signed donor card is not enough. Monique"

You can view the photo-journal of activities I've been involved in at Organ Donation Awareness

This is a good time for Canadians to remember how they can help one another. One donor can save up to eight lives through organ donation and, save or improve up to 50 lives through corneal, bone, skin and other tissue transplants. There are 1895 patients waiting for transplants in the Province of Ontario and 30% of them will die before receiving their life saving transplant. Would you like to help promote Organ & Tissue Donation Awareness as a volunteer for Trillium Gift of Life Network? Volunteer application forms can be accessed from the website at: Gift of Life


2 – COMING EVENTS

Toronto Support Group meetings – Wednesdays at 11am –

“WAITING IN HOPE” MONDAYS 11am to 12 Noon in Room NCSB 12C 1202 - "Waiting in Hope" offers a place for patients and/or support persons to gather together and share their experience and how it impacts their sense of spirituality, faith and understanding of life.
Info: Chaplain Ann Vander Berg at ext. 16-5276 or 416-946-4501 ext. 5276

Kitchener Support Group Meeting Tue., May 3, 2005 7:00PM at the Lions Arena, (corner of Rittenhouse & Block Line Rd.) in Kitchener, ON. (For more info please call Denise Secours at 519 578-0288). Meetings are the 1st Tuesday of every month. Marcel Secours just sent a note asking us to please help them advertise the group. So far they are a small group but meet regularly and enjoy their evenings together. Please let anyone you know in the Kitchener-Waterloo-Cambridge area about this new group. Thanks.

Toronto Lung Transplant Civitan Club Golf Tournament – Thursday, May 26, 2005. To raise money for temporary housing for pre-transplant out-of-town patients. Contact Carmine or Anna Foglia (905) 856-2950.

June 9, 2005 (Thursday) GOLF TOURNAMENT – Mark your calendar! This is a special third-party event in association with the Toronto General & Western Hospital Foundation to raise funds for Lung Transplant Research at the Toronto General Hospital. It will be held at the Castlemore Golf & Country Club, Brampton, Ontario with a tee of time of 1PM followed by a dinner at 7pm. Dinner only guests will be most welcome also. To register: Peter Laurence. To dontate prizes and silent auction gifts: Kim Cassar. General info: Merv Sheppard.

TRILLIUM GIFT OF LIFE NETWORK MEMORIAL SERVICE - FRiday, June 10, 2005 at 7:00 PM – St. Michael’s Cathedral, 65 Bond St., Toronto A “GIFT OF LIFE CEREMONY” SERVICE HONORING ORGAN AND TISSUE DONORS AND THEIR FAMILIES. Mark your calendars and plan to attend this wonderful opportunity to show our thanks and gratitude to our donor families as we honor them.

Lung Transplant Picnic and BBQ – Sunday, June 26, 2005 at 12noon. Huron Park, Mississauga, ON. (This was originally planned for July 10th but that date conflicted with the Transplant Games preparations and many vacation plans). Info: Merv Sheppard.

World Transplant Games, London, Ontario, Canada 2005 July 16th to July 24th, 2005
You can access on-line registration forms and also become a volunteer at the following site: Transplant Games

Annual Craft and Bake Sale – Thursday, October 20, 2005 – Eaton Lobby (Elizabeth St Entrance) 8:30AM – 5:00PM) – It’s not too early to start working on your projects.

4 - PATIENT UPDATES

PATIENT CARE PAGES – updates
To access patient care pages please log on to:
CarePages

A new page has been set up by Lisa Mitton for her sister Kristy. Lisa says that Kristy is currently listed for a liver/double lung/pancreas transplant. She is 23 years old and has Cystic Fibrosis. While it is her liver that is in the worst shape, it is felt that it would be benefical to do all organs at once. Any words of encouragement or stories would help her keep a positive attitude.

CURRENT CAREPAGES
Bert Barron – CarePage Name: bbingonish
Jim Boone – CarePage Name: jbboone
Carla Borton Carr – CarePage Name: CarlaThunderBay
Dave Dunlop – CarePage Name: davedunlop
Marlene Gomes – CarePage Name: marlenesupdate
Herb Kershaw – CarePage Name: herbk
Kristy Mitton - CarePage Name: KrisMitton
John McNeil – CarePage Name: jnmcneil
Roger Plumb – CarePage Name: RPlumb
Fred Reid – CarePage Name: fredreid

Any patient can have a Care Page and enjoy the benefits completely free of charge.
When you log on you will be able to:

A - Create a CarePage of your own or view someone else's CarePage.

B - Post and receive news updates - concerned family members and friends can access the most recent news about the patient.

C - Post and receive messages - loved ones may leave messages in a non-intrusive manner, regardless of time or geographic location.

D - Share patient information - the personal and secure CarePage contains important contact information, as well as patient room numbers and TGH visiting hours for that patient.

E - Make a donation to the Toronto General and Western Hospital Foundation. When you make a contribution to Toronto General & Western Hospital Foundation on behalf of the patient, the foundation will send them a card acknowledging your gift (but not the amount). Donations can be flagged for any purpose you wish. For example, to direct your gift to Lung Transplant Research, simply indicate this and the monies will be allocated for that purpose.

3 – PHOTO GALLERY – YOU ARE WELCOME TO VISIT AND BROWSE ANYTIME:
Photo Gallery


Merv Sheppard
1-1198 Swan St
Ayr ON N0B 1E0
519.632.7940
Fax 519.632.9562
Email: Merv Sheppard
Web: Merv Sheppard

Organ Donation Awareness: Information
Trillium Gift of Life Network: Gift of Life

Canadian Transplant Association: CTA

Organ and Tissue Donation―The Gift of Life―Talk to your family―Your decision can make a difference.

To Support Transplant Research:
Toronto General & Western Hospital Foundation
WW 1-404, 399 Bathurst Street
Toronto, ON M5T 2S8
Tel: 416-603-6433
Fax: 416-603-6224
(Donations can be flagged for any purpose you wish. For example, to direct your gift to Lung Transplant Research, simply indicate this and the monies will be allocated for that purpose).
Join our Campaign
Together We Make Life Better
Make a Donation


This communication is intended for the use of the individual or institution to which it is addressed and may not be distributed, forwarded or disclosed to other unauthorized persons. Patient information contained herein is published with permission and the material may contain other confidential or personal information which may be subject to the provisions of the Freedom of Information and Protection of Privacy Act. If you receive this communication in error, please notify the sender immediately and delete or destroy the communication. Thank you for your cooperation and assistance.

Trillium Gift of Life Network

Photo gallery for this post:
Organ Donation Awareness

Trillium Gift of Life Network (TGLN) was created in December 2000 by the Ontario Government to assume the role of Ontario's central organ and tissue donation agency with the challenge to significantly increase organ and tissue donation across the province and improve related processes and functions. As outlined by the Trillium Gift of Life Network Act, the Network's mandate includes:
* Advising the Minister of Health and Long-Term Care on matters relating to the donation of organs and tissue;
* Planning, promoting, coordinating and supporting activities relating to the donation of organs and tissue for transplant;
* Planning, promoting, coordinating and supporting activities relating to education or research.

I had the good fortune to tell my transplant story to many of the new Clinical coordinators during their orientation and training. (see photo gallery, above) They will be available to assist on-site at the majority of hospitals in the Province of Ontario as Trillium Gift of Life Network adds to its clinical support team of Community Hospital Donation Coordinators. Already in Ontario’s neurotrauma hospitals TGLN’s In-Hospital Donation Coordinators and their on-call teams are available in-house to assist with organ and tissue donation cases.

As a very grateful recipient of a lung transplant in April, 2002, I am very proud to be a Provincial Volunteer speaker for TGLN to give group talks and presentations on Organ and Tissue Donation Awareness. I can honestly say that I have never worked with a more wonderful, caring and dedicated group of people than the TGLN staff. They are in the business of saving lives by helping to make it possible for people like me to receive the greatest gift of all, the Gift of Life.

But they cannot do it alone. Would you like to help promote Organ & Tissue Donation Awareness as a volunteer for Trillium Gift of Life Network? Volunteer application forms can be accessed from the website at: Gift of Life

Wednesday, April 06, 2005

Transplant Network News 4/09/05

IN THIS ISSUE:
1 – Coming events (see April 14th special noon event)
2 – Patient updates & CarePages
3 – Photo Gallery

1 – COMING EVENTS

Toronto Support Group meetings – Wednesdays at 11am –

“WAITING IN HOPE” MONDAYS 11am to 12 Noon in Room NCSB 12C 1202 - "Waiting in Hope" offers a place for patients and/or support persons to gather together and share their experience and how it impacts their sense of spirituality, faith and understanding of life.
Info: Chaplain Ann Vander Berg at ext. 16-5276 or 416-946-4501 ext. 5276

Kitchener Support Group Meeting Tue., May 3, 2005 7:00PM at the Lions Arena, (corner of Rittenhouse & Block Line Rd.) in Kitchener, ON. (For more info please call Denise Secours at 519 578-0288). Meetings are the 1st Tuesday of every month.

Brant County Organ Donation Awareness Curling Bonspiel, Sat., April 9, 2005. Info: Rosemary Ebert - Rosemary says entries are filling up fast and you must let her know immediately if you plan to curl. A team consists of 4 players. The Lead, the Second, the Third or the Vice-Skip and the Skip. Every curler plays 2 stones per end. Individual entrants will be assigned to teams when signing in at the bonspiel. Curlers bring their own rubber soled shoes (such as regular curling shoes or running shoes) and the organizers will tape them on the bottom for sliding on the ice. Brooms are provided. Lunch only guests are very welcome but please email Rosemary that you are coming.

SPECIAL PRESENTATION THURSDAY, APRIL 14, 2005 AT 12 NOON. ACOSTA CANADA - 250 Rowntree Dairy Rd, Vaughan, ON L4L 9J7 – Susan Kershaw (wife of Herb Kershaw who just received his lung transplant this past weekend) and her coworkers had a fund raiser for our transplant program. Dr. T. Waddell will be on hand to accept the cheque and give a presentation on lung transplantation. Susan would like to invite any pre or post transplant patients to come and support their program. Park in visitor’s parking and advise the receptionist you are there to see Susan Kershaw. Rowntree Dairy Road is west of Hwy 400 between Hwy 407 and Hwy 7. Rowntree runs west off Weston Road. Info: Susan Kershaw

National Organ & Tissue Donor Awareness Week April 17 - April 23, 2005 – This week will be a good time for Canadians to remember how they can help one another. One donor can save up to eight lives through organ donation and, save or improve up to 50 lives through corneal, bone, skin and other tissue transplants. Would you like to help promote Organ Donation Awareness as a volunteer for Trillium Gift of Life Network? Volunteer application forms can be accessed from the website at: Gift of Life

Windsor Organ Transplant Bowl-A-Thon will take place at the Rose Bowl Lanes April 23, 2005. For more information contact George Mcleod at (519) 735-7619.

Toronto Lung Transplant Civitan Club Golf Tournament – Thursday, May 26, 2005. To raise money for temporary housing for pre-transplant out-of-town patients. Contact Carmine or Anna Foglia (905) 856-2950.

June 9, 2005 (Thursday) GOLF TOURNAMENT – Mark your calendar! This is a special third-party event in association with the Toronto General & Western Hospital Foundation to raise funds for Lung Transplant Research at the Toronto General Hospital. It will be held at the Castlemore Golf & Country Club, Brampton, Ontario with a tee of time of 1PM followed by a dinner at 7pm. Dinner only guests will be most welcome also. To register: Peter Laurence. To dontate prizes and silent auction gifts: Kim Cassar. General info: Merv Sheppard.

TRILLIUM GIFT OF LIFE NETWORK MEMORIAL SERVICE - FRiday, June 10, 2005 at 7:00 PM – St. Michael’s Cathedral, 65 Bond St., Toronto A “GIFT OF LIFE CEREMONY” SERVICE HONORING ORGAN AND TISSUE DONORS AND THEIR FAMILIES. Mark your calendars and plan to attend this wonderful opportunity to show our thanks and gratitude to our donor families as we honor them.

Lung Transplant Picnic and BBQ – Sunday, June 26, 2005 at 12noon. Huron Park, Mississauga, ON. Info: Merv Sheppard.

World Transplant Games, London, Ontario, Canada 2005 July 16th to July 24th, 2005
You can access on-line registration forms and also become a volunteer at the following site: Transplant Games

Annual Craft and Bake Sale – Thursday, October 20, 2005 – Eaton Lobby (Elizabeth St Entrance) 8:30AM – 5:00PM) – It’s not too early to start working on your projects.

2 - PATIENT UPDATES

PATIENT CARE PAGES – updates
To access patient care pages please log on to:
CarePages

A new page has been set up by Lisa Mitton for her sister Kristy. Lisa says that Kristy is currently listed for a liver/double lung/pancreas transplant. She is 23 years old and has Cystic Fibrosis. While it is her liver that is in the worst shape, it is felt that it would be benefical to do all organs at once. Any words of encouragement or stories would help her keep a positive attitude.

CURRENT CAREPAGES
Bert Barron – CarePage Name: bbingonish
Jim Boone – CarePage Name: jbboone
Carla Borton Carr – CarePage Name: CarlaThunderBay
Dave Dunlop – CarePage Name: davedunlop
Marlene Gomes – CarePage Name: marlenesupdate
Herb Kershaw – CarePage Name: herbk
Kristy Mitton - CarePage Name: KrisMitton
John McNeil – CarePage Name: jnmcneil
Roger Plumb – CarePage Name: RPlumb
Fred Reid – CarePage Name: fredreid

Any patient can have a Care Page and enjoy the benefits completely free of charge.
When you log on you will be able to:

A - Create a CarePage of your own or view someone else's CarePage.

B - Post and receive news updates - concerned family members and friends can access the most recent news about the patient.

C - Post and receive messages - loved ones may leave messages in a non-intrusive manner, regardless of time or geographic location.

D - Share patient information - the personal and secure CarePage contains important contact information, as well as patient room numbers and TGH visiting hours for that patient.

E - Make a donation to the Toronto General and Western Hospital Foundation. When you make a contribution to Toronto General & Western Hospital Foundation on behalf of the patient, the foundation will send them a card acknowledging your gift (but not the amount). Donations can be flagged for any purpose you wish. For example, to direct your gift to Lung Transplant Research, simply indicate this and the monies will be allocated for that purpose.

3 – PHOTO GALLERY – YOU ARE WELCOME TO VISIT AND BROWSE ANYTIME:
Photo Gallery


Merv Sheppard
1-1198 Swan St
Ayr ON N0B 1E0
519.632.7940
Fax 519.632.9562
Email: Merv Sheppard
Web: Merv Sheppard

Organ Donation Awareness: Information
Trillium Gift of Life Network: Gift of Life

Canadian Transplant Association: CTA

Organ and Tissue Donation―The Gift of Life―Talk to your family―Your decision can make a difference.

To Support Transplant Research:
Toronto General & Western Hospital Foundation
WW 1-404, 399 Bathurst Street
Toronto, ON M5T 2S8
Tel: 416-603-6433
Fax: 416-603-6224
(Donations can be flagged for any purpose you wish. For example, to direct your gift to Lung Transplant Research, simply indicate this and the monies will be allocated for that purpose).
Join our Campaign
Together We Make Life Better
Make a Donation


This communication is intended for the use of the individual or institution to which it is addressed and may not be distributed, forwarded or disclosed to other unauthorized persons. Patient information contained herein is published with permission and the material may contain other confidential or personal information which may be subject to the provisions of the Freedom of Information and Protection of Privacy Act. If you receive this communication in error, please notify the sender immediately and delete or destroy the communication. Thank you for your cooperation and assistance.<