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.

Balancing Time, Effort, and Results

It is usually said, if you want something done ask a busy person. This got me thinking about what does a busy person do that the rest of us don't. How does a busy person get to effectively balance time and effort while achieving results?

Externally, we all look the same; at least generally. It isn't race, sex, education, social status, nor any other superficial characteristic. What is key about those who achieve what they put their minds towards seems to stem from the following:

• purpose
• character
• will and strength of resolve
• goals that are well defined 
• objectives that are clear
• respect for others and by others 
• their ability to control time 

How involved are you? What contributions are you making to the existence of someone other than your own?  If a few words can make a difference to you today what would they be?

1. Get involved
2. Make a positive difference 
3. Help someone today
4. Get on purpose
5. Commit to something bigger than you
6. These are just a few

What would be your action phrase? Open opportunities that you didn't know were available.

You have what it takes to be a volunteer. Yes, it requires commitment and dedication, and functioning in a team environment can help make it feel easier so that you're not overwhelmed. You will learn skills. develop good attributes, and just maybe get recognition certificates in the areas of competence that you demonstrate.

Let us know if you're interested, as we try to make our programs for volunteers quite meaningful. Remember - balance your time, put in your efforts, and see the results.

Special thanks to the 100 Voice Project in 2014. Looking forward to your program in 2015. 

When a plan comes together

For weeks there has been planning, organizing, meetings, and a myriad of activities that surrounded the planning of the gala dinner for the Cffb's - Wine, Diamonds and Jazz event which was held recently. From the glowing reports that we have received, we would conclude that everyone had a great time.

As you can imagine, it took the effort of many teams to pull this all together. Our volunteers, supporters, well wishers, parents of children with CF, and donors to mention a few made significant contributions to make this event a reality.

However we want to make mention of those who contributed to make the silent auction actually happen. They know who they are and will be featured on our website shortly. We're also excited about the partnerships we're developing with entities that though they required plenty paperwork for authenticity, we were able to deliver and be accepted for some aid; hopefully on a continual basis.

If you only can imagine it, there were many elements that had to work in synergy to make this event happen. Something went right as patrons want the even to be held next year and for years to come.

The event was developed to accomplish a particular purpose; to help those affected by the devastating Cystic Fibrosis [CF]. Out of this event, we will be able to help three of the families by way of small contributions in their quests for treatment of their loved ones. This is a first for the organization of The Cystic Fibrosis Foundation of Barbados [The Cffb] and we are feeling a short lived sense of accomplishment as there is still quite some ways to go.

During the awareness building for the gala dinner, we met another local who is an adult and has advised us that they too have the condition CF. We are now providing follow up so that they too can obtain the needed care. There is an urgency as the illness seems to have taken quite a toll on them and their body is showing its effects. So the race for awareness / fundraising is not over; the baton has just been passed for the next leg to continue.

We are thankful for our God-given vision to establish this foundation properly. so that when asked for the requisite compliance information by the various agencies it was forthcoming.

Those who attended the event were key. If they had not done so, it would not have been able to make the difference to those with CF. We thank you. To our sponsors and donors, we extend heartfelt thanks and will continue to do so on our website, which we are rethinking currently to make it more interactive for those who visit; so they can receive current information.

We are now preparing for the Aware to Care Walk scheduled for July 4, 2015. This was our initial major event for the year now in its second year. Why do we keep going? CF is not going to stop until there's a cure. It seems to mutate and we must keep adapting to be victorious.

Standards of a charity - The magnificent seven

For many, when they are affected by something / someone that moves them emotionally; in many cases there begins the need to start a charity. What then happens is that another organization begins, sometimes duplicating the work of another one, facing scarcity and lack at various levels.

If this seems like an odd thing to read, examine it closely and you'll see that based on observation it isn't.

There's a streak that runs through organizations of all types. The people involved often need to feel a sense of belonging. They want to give back and contribute. They want to ease the burdens of others. However, regardless of the organization, there's a need to have standards to ensure that everyone operates in alignment and on a similar platform with clarity, if not the result can be chaos.

What are some of these standards? Let's highlight a few of the more serious ones below:

• Transparency - decisions made and actions taken should always be without prejudice
• Accountability - helps in keeping everyone hones and corruption at bay
• Fairness - assists in ensuring that everyone is treated equally
• Documentation - is necessary for posterity and lends to historical value of decisions taken, meetings held, discussions which took place. Documentation can be done physically / virtually utilizing any of the available storage media which are now quite affordable
• Rules - established the parameters within which everyone operates
• Compliance - provides the controls to ensure the rules are adhered to
• Non-discrimination - goes a step further than fairness ensuring that any and all prejudices are eliminated at the root cause

Though there may be others, these "magnificent seven" capture the essence of all the issues. To be truly helpful, the charity must have a loving, yet discerning nature about it. At the Cffb we are committed to these standards and have them documented so that regardless of the individuals in leadership or among the members / volunteers; the organizations will remain true to its mission.

Why do we see the sense of setting standards within a charity? It's because, We're Aware to Care!

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. 

This work's never over...

"Phew...."

We've all had these moments when we thought that we couldn't possibly go on anymore. It seems like the more work we put in, the more work seems to show up. It often leads to the question of when this work will be over.

If you're doing a great job, committed to your values and ideals; then there's one thing that is constant regardless of the language. When you want something done, ask a busy person. Why does a busy person keep getting more work when others who seem to have excess time never seem to be able to fill up their day?

Within a charity, there's always something to be done. Here are a couple areas:

• Research and development 
• Fund-raising
• Administration 
• Planning
• Networking
• Program development and management
• Lobbying  
• Training 
• Recruitment and selection 
• the list can go on. 

Though people have a need to belong to something / grouping; it must be serving a cause that they are interested in. They must feel that their work is valued. The leadership of these organizations must have great people skills. 

The ability to recognize the strengths and weaknesses of everyone while helping them in a nurturing way to enhance their strengths while addressing their weaknesses requires skill with people. We hope that within the Cffb, we are able to work with others in a manner that unifies each other through common goals, objectives, standards, and ideals. 

Is this easy? No; and can require as many approaches are they are diversities in the attitudes of individuals. One must learn to be diplomatic yet blunt and direct, being able to adapt to situations as required to ensure that the agreed values are maintained and issues are topic, not personalities. 

Everyone has a point of view and must be given ear in light of its merit. Quick evaluation and requisite action is necessary towards the building of an organization; whether it be a not-for-profit or one who has their focus on the profit as their motive. When building organizations, there's one thing for certain. This work is never over.

Ps. Did you know you can donate to our cause here? We are geared to help those children who have Cystic Fibrosis. You can also come to our gala dinner next month.