CFW and Burke Bear

CFW and Burke Bear

CFW has 56 member countries with many new members coming from developing parts of the world. With these new memberships comes an awareness of the desperate situation for those who have CF, are caregivers or medical professionals in countries like Bulgaria, Romania, Georgia, Uruguay, Mexico and South Africa to name a few.

In 1938, when cystic fibrosis was first described, more than 80% of patients died within one year of birth. In 1980, children with cystic fibrosis lived until the age of ten. By 1990, thanks to scientific breakthroughs including lung transplants, children with cystic fibrosis lived into their late teens. Today, people with cystic fibrosis have an average life expectancy of 32 years in developed countries. Sadly, many children with CF in so-called developing countries still die in childhood due to poor treatment, lack of medications and improper nutrition. In many countries children with CF die undiagnosed and become lost in child death statistics with little done to improve theirs or the lives of those to come.

It is the mission of CFW to reach out to these countries by working to help develop effective CF clinical care. This includes helping to organize much needed medications, development, training and education of health care providers and spreading awareness of CF at the government and community levels of these countries. It is our objective to find a solution that will bring long-term benefits to the existing persons with CF and to those patients who will be born in the future. Until a cure is found, we will strive to provide humane situations for those who are currently suffering from an inhumane disease globally.

Burke P. Bear

Burke poses with a new friend from Georgia

Burke P. Bear- was named after an incredibly spirited young man, Burke Derr, who died of Cystic Fibrosis (CF) just two days before his 19th birthday. Although his family in the USA miss Burke terribly, they believe his spirit and legacy live on in this Boyd’s Limited Edition© Teddy bear. Burke now has joined forces with CFW in order to continue to fulfill the dream of a young man who wished to bring help to all who suffer with CF worldwide.

Burke P. Bear has visited more than 35 US states, two Canadian provinces, and a number of world countries including England, Thailand, the United Arab Emirates, Greece, Russia, Nepal, Australia, Georgia and Israel through a series of volunteer hosts. Burke has been featured twice by the London Teddy Bear Times, in several US newspapers and received the title "Honorary Ambassador for Building Bridges of Light" for his peace efforts with the Israelis and Palestinians. Burke has also been spreading information about Csystic Fibrosis and raising funds to aid in the fight against this disease, bringing in over $130,000 thus far. This 14 inch long, bean-stuffed, teddy bear has been spreading his magic and gift of love worldwide. His most recent visit took him to Tbilisi, Georgia where his presence brought the very special gift of hope for a brighter tomorrow for hundreds who live with CF and do not have access to life sustaining clinical treatment, necessary medications and supplements.

Where to begin……

CFW and Burke P. Bear will work on a worldwide level to bring change where change is needed. We begin our campaign with our member country ‘The Republic of Georgia’ and CF Charity Foundation in Tbilisi as our Pilot Project.

Mothers waiting for medical attention for their infants at the Tbilisi, Georgia Children’s Republic Hospital

The situation in CF related care today in Georgia leaves CF patients with no CF clinical care or delayed service at best and very rarely at the beginning stage. Most persons with CF are forced to try to seek care in foreign countries at great financial and moral expense to their families.

There are no training facilities for medical staff, among parents, teachers and nurses of the patients. The basic antibiotics and pancreatic enzymes that most CF patients rely on daily are nonexistent for persons with CF in Georgia. While the average life expectancy in developing countries has moved to beyond 32 years, in Georgia the average life expectancy for CF patients is only 16. A majority of persons who are suffering do so at the most extreme inhumane level due to lack of access to crucial treatment and medication. While advancements in Western developed countries continue to improve and knowledge about these advancements spreads globally, the lack of access only increases the suffering in underdeveloped nations like Georgia.

The Project to bring change….

CFW and the CF Charity Foundation of Georgia, will work in collaboration to increase average life expectancy and quality of life for persons with CF by developing sustainable advancements in the delivery of clinical care, access to medication and the spread of education in the treatment of CF in the Republic of Georgia.

Name of Project: “Georgian National Cystic Fibrosis Center”
Goal: Provide Cf diseased children and adults currently living in the Republic of Georgia, and those who will be born in the future, access to appropriate clinical care, diagnostics, education, necessary medications and supplements in the treatment of CF.	Methods and Implementation: The proposed project will be implemented through a series of five phases. Each phase will be subject to an evaluation with documented successful outcome prior to advancement to the next phase.
Objectives: February 2004 - Renovate and furnish a wing of the Children’s Republic Hospital creating a specialized (10 bed) CF clinic and laboratory	Phase I An existing empty wing of the Children’s Republic Hospital has been donated to the CF Foundation of Georgia for the implementation of a specialized CF clinic and a laboratory in Tbilisi. CFW will provide the funds necessary to cover the cost for renovation and basic furnishings. A licensed contractor working as an Advisor to the CFW will oversee these operations and report on progress and successful completion.
June 2004 - • Educate and train a Georgian specialized clinical team to staff and operate the CF clinic and outreach program	Phase II CFW will send a group of (2) CF Specialized clinicians, (1) CF Nurse, (1) CF Nutritionist and (1) Physiotherapist to Georgia to train the future clinic staff and evaluate the needs for medication and additional laboratory and technical equipment not provided in phase I.
January 2005 - • Equip a basic laboratory facility with a trained technician, necessary equipment and diagnostic tools	Phase III Using the data provided by the CF specialized team in phase II, CFW will equip the laboratory and train a technician in diagnostic procedures and optimal microbiology.
June 2005 - • Supply CF patients with access to all necessary technical equipment, education and medication necessary to improve their treatment methods • Operate and manage an outreach program that will ensure all patients in Georgia have access to trained specialists, treatment and up to date information • Establish a national register for all Georgian CF patients • Host an annual Georgian educational CF conference to increase awareness in the medical, lay and governments societies of Georgia	Phase IV CFW will negotiate access to necessary medications and technical equipment through established networks among suppliers and Pharmaceutical organizations. An “out reach“ program will be established by means of creating a mobile clinic and dispensary operated by the existing trained specialists (phase II) to travel throughout Georgia on a quarterly basis reaching those person who are unable to utilize the clinic in Tbilisi. A database will be created from intake forms filled out by the existing staff and caretakers at the time of diagnosis. CFW and CF Foundation of Georgia will host the first annual educational seminar in Tbilisi with both lay and medical topics being covered. Local media, brochures and clinical staff will advertise this conference.
January 2006 - • Educate the CF Charity Foundation in philanthropic methods to provide sustainable financial support for the operation of the CF specialized clinic and to all persons with CF nationally regardless of race, religion, economic situation, age or geographic location	Phase V CFW will send marketing specialists (2) to train and educate the CF Foundation of Georgia on current philanthropic methods such as grant writing, hosting events and building corporate partnering programs. CFW will work with the WHO organization to continue to educate the Georgian government on the need to support those who suffer from CF in Georgia.

The final outcome of the project will mean a permanent solution to the existing problem for CF patients within Georgia resulting in increased life expectancy and enhanced quality of life. This project will become a working model to be replicated successfully in member countries that are currently striving to bring about positive change for persons with CF worldwide. This project, and others like it, has the ability to become a working model that helps to implement similar programs advancing healthcare facilities and treatment methods in developing countries.

Reaching out…….

In order to fund this project and future similar projects globally, CFW has started a Burke Bear Campaign internationally. We are reaching out to individuals, corporations and friends of the CF community asking that they join us in bringing Burke to the world to create an international campaign that positively affects those who suffer with CF globally.

How can you get involved…….

Start an individual campaign purchasing Burke as a gift to friends and family during the holidays, for birthdays or a special gift to yourself. Let friends and family know about Burke and how they too can join the campaign just by visiting the CFW website at www.cfww.org and purchasing Burke through our online secure ordering section.

Georgian Refugee child shows Burke special attention at the Children’s Republic Hospital in Tbilisi
Run a community event such as a “Teddy Bear Fair”, work with your community volunteers and sponsoring organizations, or ask local retailers to offer Burke to their customers with proceeds going directly to persons who suffer with CF. CFW offers a Burke Bear toolkit full of ideas and helpful information in organizing and running a successful event. Please contact cnoke@cfww.org or just visit our community fundraising pages at http://www.cfww.org/Burke/community_sponsor.asp to get a copy of our toolkit. CFW will work with you to bring information to the CF community about your event by creating information on our website and offering promotional tools such as published newsletters, pins, thank you cards, images and graphic tools. We can help you run an event that will be fun and rewarding for everyone involved.

Corporate Sponsors………

Georgian Refugee child shows Burke special attention at the Children’s Republic Hospital in Tbilisi

CFW is reaching out to corporate sponsors interested in aiding our organization in reaching persons with CF around the world.

Start a promotional campaign using Burke P. Bear the ‘Ambassador of Love, Peace, having fun and helping those who suffer from cystic fibrosis.’ Let your colleagues know about CFW and Burke Bear by sending them to our website at www.cfww.org, where Burke can be purchased. Use this lovable furry friend to award customers, letting them know you appreciate their business and that your company is a responsible contributor to creating better lives for children who suffer from CF. Show consumers that you are a progressive thinking company with incredible vision for the future and a social commitment to improving lives of those who are less fortunate. CFW has already begun working with corporate friends in the CF community like Solvay Pharmaceuticals. Solvay has recently joined the Burke Bear Campaign through Lithuania, Germany and Ireland bringing Burke to their employees, partners and friends. By using Burke as a gift at workshops and educational seminars, Solvay is able to reward participants and also reach out and aid CFW in our battle against CF on a global level.

All proceeds from the Burke P. Bear campaign will go directly to supporting our vision and mission. Contact Christine at cnoke@cfww.org for more information on CFW and launching a campaign at your company or visit www.cfww.org>fundraising>Join the Burke Bear Campaign.
Join the Burke Bear Campaign today, because together we can make a difference.