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. 

Reflections of a charity

Serving in a charity is never easy. It always seems that there is more to be done than they are people to fulfill the various roles and activities. Attracting and mobilizing volunteers is a never-ending, continuous process that one cannot become weary of doing. Activities have to be planned and coordinated with the various public stakeholders with whom a charity interacts. Yet...

...when you do get a moment to pause and think, even for a little while, the questions come.

1. Are we doing enough of the right things to help those for whom the charity was designed to help?
2. What if family situations change, especially when children are involved, what systems are in place to fill the gap? E.g. Divorces, the death/serious injury of a parent, and the list can go on. 
3. Coming closer to home; what are we doing other than trying to raise funds to help those with Cystic Fibrosis? 
1. Meetings have discussed getting doctors certified to assist sufferers locally and reduce at least the travel expenses of having to commute overseas for medical treatment. 
2. So far, we have been unable to contribute to the global effort of finding a cure. 
3. Our capacity for at least doing a local diagnostic is far from being able to determine if someone genuinely has CF, without them having to travel overseas. 
4. We need new fundraising activities as the public grows bored with the current programs. 
5. Research and development are needed so that we can determine what is needed to enable the foundation to obtain a headquarters, permanent staffing that can interact with the public when volunteers are earning their keep to sustain themselves and their families personally, new sources of donors, sponsors, and other supporters. 
6. Sound and dedicated administration practices and procedures implemented and sustained to ensure compliance of the foundation in a manner that's timely. Ensuring that we can capitalize on every available incentive that saves leakage of funds. 
4. Growing the volunteer base so that committees can be well established, and leadership can be changed on occasion to bring in a fresh perspective from others. 

The work of a charity is too important to be trivialized. Are you willing to step up to the plate and function with integrity and interact as a team player? How committed are you to continuous learning and development of networks? 

Stop and think about how you can make a difference via your contributions. Once you're clear on that contact us via www.cfbarbados.org we can use your help. 

Getting ready...

When someone has CF their entire life is one of getting ready. With medications in the morning, tapping/the vest they have to wear to free up the mucous, dodging germs, the doctor visits. and the list goes on.

The rest of us who support them also must be ready. That's what we're doing for July 1, 2017. We're getting ready to walk/run for just about 5k to raise awareness and funds for Cystic Fibrosis here on the island.

We are The Cystic Fibrosis Foundation of Barbados and we're Aware to Care. Make contact with us and offer your services, we are always in need of volunteers. Yes, we're always getting ready, since the requirements of caring for someone with CF are tireless; we too must be relentless in our quest to find a cure and to help those suffering to "breathe" a little easier knowing they are cared for by others.

November 2016 Fundraising is here!

Fundraising is an important aspect for The Cystic Fibrosis Foundation of Barbados (Cffb). It is even more critical since cystic fibrosis is quite expensive to treat, and there is no cure. So, how do we enable families to better cope? By assisting them in the raising of much needed funds.

Monthly costs for medication can average US$12,335.00; and this does not include the freight costs to Barbados of US$300. Additionally, doctor visits are an additional cost that requires travel abroad to obtain medical treatment - this usually entails airfare, accommodations, and related ground expenses. 

The Cffb's approach to fundraising is not to only take, but to also give something in return and therefore on Saturday November 12 and 19, 2016; we will be offering the following as a way of raising funds:

Please come out and support us. We look forward to seeing you at the Sky Mall in Haggatt Hall and we begin at 09:30 until 18:30 Hrs. [9:30 am until 6:30 pm]. These affected children really need your help! Thank you in advance for your kind support and contributions.

Please visit our website www.cfbarbados.org for continued updates. Have a wonderful week ahead!

Standards are Key to Success

From its inception, We at the Cystic Fibrosis Foundation of Barbados [The Cffb] decided that we wanted to be different. We wanted to be the organization by which others would be bench-marked. We wanted to rewrite the standard for excellence among charitable organizations in Barbados first and then farther afield.

Cystic Fibrosis is an expensive illness requiring large sums of money for those suffering with it and their families, due to this accountability is a huge requirement for this organizations functionality.

Here's what we've found. The need for standards isn't understood nor appreciated by everyone. Some people want to have the benefits of being associated with the organization without making the necessary contributions. It doesn't happen on its own. When we engage in our activities, it is done for the benefit of all involved, so that all affected by CF can benefit. It is never in isolation and can never show favoritism. Systems that are implemented must therefore be able to be applied across the board.

We as an organization, cannot allow people to use our name to raise funds for the benefit of their isolated cases. We say this because it has been attempted, and if not nipped in the bud this would have been the result. Corporate citizens would have been bombarded by requests for the same condition from the Cffb and individuals seeking aid for their own situations.

Our commitment to training ensures that when we recruit volunteers they are trained and then released to function within the various programs within the foundation. There is constant monitoring as was seen in our recent awards to our high school volunteers.  

Some volunteers were able to advance within their chosen fields of work and they too will be certified on a project basis with consideration to their developed competency.

So far, we have always had successful events as lots of hard work goes into the planning process so that execution is near to flawless, complete with fail safes. This is necessary since even the best laid plans can have unforeseen circumstances. Over time, we have seen that there is a need to consider succession planning more vigorously, since interest and circumstances in the lives of those volunteering takes place.

We need volunteers for research, planning, training, social media, fundraising, and special programs. As more people are diagnosed with CF there is a need for:

• more volunteers, 
• an adaptation of standards as new situations are experienced
• a revised business / strategic plan 
• improved operational procedures 
• fundraising opportunities via grants, donors, sponsors
• territorial expansion as other branches of the organization are required to fulfill the needs within the Caribbean
• increased medical access 

Networking opportunities are paramount. We interact with various organization that can point us in the direction of realizing aid. This aid is used to further empower our volunteers to function so that the ultimate beneficiaries, those affected by CF can benefit. 

No one likes to hear that they have a life threatening illness. There are a variety of emotions that accompany such a pronouncement. When further compounded that it can be misdiagnosed due to similarities with other respiratory illnesses like asthma, it can put families and loved ones into a tail spin of doubt and uncertainty.  

There's one thing that's certain. We are the Cystic Fibrosis Foundation of Barbados, and we are Aware to Care. 

Volunteers - Youth and Finance

Barbados has hope! This statement is due to the caring nature of some of our youth and financial institutions. We at The Cystic Fibrosis Foundation of Barbados [Cffb] can say this is true, because we have experienced it.

The youth of The St. Michael School and the Frederick Smith Secondary School have joined the volunteer forces of the Cffb as they are preparing their major fundraising initiative for 2015 where proceeds go towards helping the growing numbers of families affected by Cystic Fibrosis [CF]. These youth will be participating in a variety of ways to realize this and will be given certificates for the initiatives within which they participate. This is because the Cffb believes in recognizing the efforts of their supporters, and volunteers are no exception. The volunteer efforts of these students go towards their high school certification on their curriculum.

Corporate entities are more focused on giving back to society, and they are not doing so because they have to, but they genuinely enjoy helping. For this we are thankful at the Cffb, since Royal Bank of Canada [RBC] has graciously offered and tangibly supported our efforts of building awareness and building funds to help those afflicted with CF. We have had a phenomenal time sharing with their team mates who participated in our outreach efforts, and thank them for putting their shoulders alongside ours and really serving. RBC we look forward to a long and fruitful relationship with you and we want to publicly thank you for your support, especially when we recognize that you had choices of organizations that you could have chosen to serve. We have found RBC to be an organization that cares. The actions of these groups cements it in our minds that Barbados has hope!

What did you just say?!?!

The words in this title echo around the world from people who have never met and yet have something in common; they just received bad news from their doctor. In our peculiar instance, it relates to Cystic Fibrosis (CF), a genetic illness that throws the families of those diagnosed into a tail spin. 

Many have never heard about it, and not knowing what to expect are faced with a slew of emotions. There's no prior warning that their family member who was experience respiratory challenges could have CF, they thought it might have been just asthma.

We are Aware to Care! This is the motto of the Cystic Fibrosis Foundation of Barbados (Cffb). We do so via a number of awareness building programs, including fundraisers.

Though we have been around for some time as an organization, we've only truly emerged to the public during the last year when we had our first fundraising walk which was followed up by our gala dinner earlier this year, while interspersed with awareness campaigns in the malls, health fairs, and even the university.

Have we really made a difference? Not in the way that we would like to since we believe that there are a number of people who are unaware of the condition since it is quite close to asthma.

Last year's symposiums was an eye opener for the public and the medical fraternity, where health care providers from the USA who are specialists in providing treatment came and shared their experiences with us in Barbados.

In Barbados, there is no one really certified to provide the quality care needed for this illness. We're hoping to make a difference by enabling those interested to become certified.

CF is quite expensive to care for, especially for local families. The medication is not readily available on island and has to be imported. No two people who have it and are not of the same family should be in close proximity as they can contaminate each other and it can prove fatal to them. Special care is needed in all instances including medical emergencies like hurricanes.

Our volunteer base is growing but there's still a need for more people since there's quite a bit to do. We would welcome your help in any way you can. Please visit our website for more details at www.cfbarbados.org.

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.