Champions in the fight against CF

When the Turton's first came into contact with Cystic Fibrosis [CF], they were eventually referred to the USA in order to get the medical assistance that was not available here in Barbados nor anywhere within the Caribbean region. Over the years, their family has become well known to their medical team at the Cohen Children's Hospital NY. 

The Turtons with their medical team at Cohen Children's Hospital

A phenomenal group, there willingness extended to visiting Barbados to help build the awareness of the illness. Educating us in Barbados as to what we should look for and where professional help may be sought. They even interacted with the medical fraternity here through lectures at various venues, enabling doctors to be able to identify the traits within patients so that they can be recommended for testing to confirm whether or not they have CF. 

Through our awareness programs, there are a few others who have been able to identify that they were impacted. Also our organization, The Cystic Fibrosis Foundation of Barbados, has become the go to entity for international travellers who wish to visit the island and in their planning want to know what opportunities for care are existent locally should they ever have an episode requiring care. 

The team at Cohen Children's Hospital have been instrumental in putting us in contact with The Cystic Fibrosis Foundation who have been quite instrumental in assisting us locally at The Cystic Fibrosis Foundation of Barbados  in becoming established to assist those within Barbados and indeed the wider Caribbean in obtaining care for their loved ones. 

To the team of Cohen's Children Hospital, not only The Turton's, but Barbados, thanks you for your care, professionalism , friendships, and accommodation in all that you have done to improve the lives of children from across the globe. Your insights and example have enabled us to become a respected entity within Barbados that offers assistance, not only to children, but to everyone who suffers from the challenges associated with CF. We remain commited to assisting those commited with CF to realize a better standard of living as they cope with the illness medically. Since interacting with you and others who have CF, we have seen the awareness grow. We still remain commited to having a regional medical team develop who can provide the care and reassurance given the example you have set. We say, a heartfelt thank you. 

Funds, Fundraising, and Funding needs

Talk about a demand that's exponential! We've grown well beyond this core group of initial volunteers.

Have you ever wondered why is it that funds are never enough, requiring fundraising to be ongoing, and the funding needs seem to be more than either of the first two can adequately cover?

If you're going at the frenetic pace like we are at the Cystic Fibrosis Foundation of Barbados [Cffb], you seldom have the time to pause and ponder. Currently, our funds don't even cover the basic needs of the foundation, which are to provide adequate funding for those affected with Cystic Fibrosis [CF] to get adequate medical treatment.

To give a bit of background, we have so much gratitude for US Based Cystic Fibrosis Foundation for the assistance they gave us when we first started out. The gave selflessly of their information, support and guidance that we were able to become established quite quickly and as a young charity, become well organized with proper structure.

In our few short years, we were able to accomplish quite a bit to assist those on the island that were seeking care. Whereas our US counterparts are "Adding tomorrows", here in Barbados, we are "Aware to Care"; building awareness within the country and indeed the region with our information about an illness that so few knew about, even though there were others who had it over the years.

In short order, we need funds.

Our fundraising efforts included gala dinners with silent auctions, the walk/run which has now become an annual event. We did awareness programs with the medical fraternity when we invited our US-based supporters to come in and assist with the sharing of the information. Still, we feel there's a shortfall. We feel as if we haven't done enough. Why? It's because this is an illness that is expensive, it mutates, and the learning curve is steep. We need to raise the bar.

Others may have this challenge as well, and we need to make our needs known. Our fundraising needs are great and need to continue with the ever increasing costs of medication and treatments which are not available on our shores of Barbados.

Our funding needs include:

• the need to support the families who are affected by CF to get medical care and medicine for their family members who are ill with CF. 
• the needs to have an established secretariat from where we can function on a permanent basis where the public can better interact with us and vice versa. 
• administration of our organization on a permanent basis since CF does not take a break, neither should the organization. We need admin equipment, including computers, telecommunications, furniture, stationery, and the list can go on. 
• the ability to contribute our share to finding a cure to the international medical research programs. 
• the training of doctors in the special field of pediatric pulmonology so that we can reduce the need to travel overseas to seek medical care. The medication is still an overseas cost, but at least the provision of on-island medical care can eliminate/significantly reduce the foreign exchange pressure the families face financially for not only the person affected by CF, but those who must accompany them. 
• the training of volunteers can be usually met with venue rental fees. Sometimes we can negotiate facilitators to donate their time, but it is not always possible. There are areas where we lack internal competence where we must seek professional help, e.g. audit reviews and other types of programs which enable us to maintain a presence in the public domain.

As usual, volunteers are a must, as there are a number of programs that we would like to implement but are short of manpower. So our topic is one that tells you. our needs expand exponentially; often faster than our ability to meet them.

Are they aware of us?

When you're involved in something, it's easy to think that just because you know what your cause that everyone else should know as well. You work hard, putting structure in place all the while trying to ensure that you do the right thing.

In meetings you speak about the vision, mission, objectives, succession, who does what and when. Then before long, you realize that for all that you've done; for all that hard work and the projects that you have put on the plate for future seasons - No one outside the immediate group knows who you are, and to be blunt - neither do they really care.

We were no different. When we mentioned that we're established to help those with Cystic Fibrosis (CF); you should have seen the blank stares. After a pause for an indeterminate amount of time, they would then go....what did you just say?

Just imagine saying to someone that there are people here among us with a rare illness that is quite expensive to treat. They have no point of reference so in their head they go - here's another one. There's going to be always a group of people asking for money for their particular cause. It's that simple. Their cases will be unique in some instances. What we're finding is that as humans, we're diverse with a variety of special health cases. The stories seem to surpass the opportunities for assistance, and in these hard times; budgets are limited.

Guess what? Despite the aforementioned, we can stop. We can't fail the youngsters and their families of those afflicted by Cystic Fibrosis. We're working hard to make the awareness grow, and the truth is, we're under resourced and under capitalized; yet we can't and won't stop.

How are we raising awareness? We will go to where you are!

Take for instance some of the places we have been and are targeting:

• Universities, colleges, public affairs and their respective events
• We will host events - walks and galas that will get us noticed 
• We will use the internet with its opportunities for having websites, using a variety of social media[ including blogs and newsletter
• We will use traditional media in a planned way - newspapers, radio, television, magazines, and the newsletters of other organizations. 

When we think / focus of the opportunities that are available, we can't dwell on the problems.

We are well structures and becoming better organized, so that we can become the bench mark for charitable organizations. Is it easy? No!

One thing is certain, "We're the Cystic Fibrosis Foundation of Barbados", and though you may not know of us yet. you will cause we're building awareness one person at a time. You'll find that as an organization, We're "Aware to Care"!

Why we need a Gala...

In the realm of fundraising, a gala is one of the nicest ways to raise funds for the host organization when it is done well. On the flip side; there's a load of hard work that needs to go into it so that the goals and objectives are realized.

That being said, we at The Cffb are embarking on this trek of hosting our first of an annual series of gala events. This year we themed it Wine, Diamonds, and Jazz, and made tickets available online via Tixpro.com and through the Wine World outlets throughout Barbados.

So now, after all has been said and done. You need to understand why we're doing this. Why do we need a gala? Here are just some of the answers:

• Cystic Fibrosis (CF) is a very expensive illness that one gets genetically. Many places including Barbados have no medical facilities that can cater to the need of those who have CF. This being said, care must be sought in the metropolitan countries. Who have the specialist medical teams and medications to treat those who have CF. 
• The medication and care is expensive. Apart from the airfare, accommodations and living expenses. We have on record where care costs a rounded USD$12,000 per month in medication only, which is a stretch for us considering that our salary scales on the island are not that high, they are no major exemptions on medication or the shipping of it, and our currency is on a ratio of USD$1.00 =  BBD$2.00 approximately. Even with medical insurance it is a horrendous costs to the families of CF suffers. 
• To date we have an identified case, where insurance coverage is not available, and the sufferer is a youngster from a single parent household. 
• Ideally, each sufferer should have three medical visits annually to ensure that there is no bacteria in the lungs that can cause fatality in the sufferer(s). 

For us, a gala is a time of fellowship, where people of all walks can come together and learn, share, experience, offer care and support to those who are in need. Do we know beforehand who would be interested in such events? No! However the hope is that the event is desireable enough that people would attend to get information that would make them more aware of the circumstances under which others live, trying to do simple things that we often take for granted - like breathe. 

Imagine, having to take so many tablets that it seems like a meal, and though expensive it tastes the same every day. Further, you have to put on a special vest to shake the mucous from your lungs or have a family member strike you repeatedly in the chest and back to shake loose the mucous, and this takes place multiple times daily. 

Further imagine being able to eat the junkiest foods that you can ever imagine all because your body cannot absorb any of the qualities of those foods - good or bad. The thing is, without the benefit of the medication to help in the break down of foods you'll be fully fed yet malnourished - hardly putting on weight and susceptible to almost every illness that seems to pass by in the atmosphere. 

Yes there are additional challenges of this illness and perhaps you'd want to read of them right here. While we can't make you support us as you may not have the means to do so. At least you're now more informed that you can at least spread the word. Who knows? Someone that you know may just be able to help in a significant manner. 

Thank you for reading this far. If you're able to - postpone your valentine celebrations to dine with us. Donations can also be made to Royal Bank of Canada in (Barbados) Limited Account #21007939. Our Charity #7600861. This information is useful for those of you who would not be able to make it. 

Why we commit to Excellence

When fund-raising, one is only taken seriously if they appear to be professional. This means the organization must have the following:

• The organisation has its policies, procedures and standards well documented
• They practice what is documented
• There is clarity and accountability
• Everyone functions well within their assigned area of responsibility
• There are budgets, reports, and cost controls 
• Programs are clear and decisions are minuted 
• All audits and reviews are current and documented 
• Volunteers and members receive various types of training

Are we doing all these things? Though it's not easy, we can say that we're making a very valiant effort of ensuring we put every meaningful measure in place. We want to ensure that before questions are asked that the answers have been addressed.

We are a Barbados based registry charity. 

Last year we begun the first of an annual series of Aware to Care walks. We were blessed to have the 100 Voice Choir Project, which is another annual event support us significantly with our fund-raising efforts. 

This year we are focusing on the Gala Fund-raising Dinner - Wine, Diamonds, & Jazz. Where tickets are available here online at Tixpro and at the Wine World locations locally. We need to raise significant funds for our families who are affected by CF. [See our flier here] 

Cystic Fibrosis costs families approximately USD$12000.00 per month / per individual who has CF in medication, plus international doctor visits; as we have no one trained in the area on island, plus airfare, accommodations, and living expenses while there. 

Additionally, the expenses of running the foundation necessitates us having to acquire - an operating base, computers and office equipment [they don't have to be new, just functional] 

It is important that we take this cause seriously as lives depend on it. Those who have CF are literally facing life / death situations every day when they cannot access the required care. Please Help Us! 

To reach us, you can use our website which has full contact details. Thank you in advance for your support. 

We are the Cystic Fibrosis Foundation of Barbados, and we are committed to excellence!