Every year, we get together for the fun walk run to raise the awareness of Cystic Fibrosis [CF]. We look forward to it and with the anticipation it brings we get excited about it. It truly has been a fun event that continues to grow. 

Walking recently and encountering some uphill terrain, it made those of us walking breathe a bit more heavily, our breathing was a bit more laboured as we trudged along. It was then the thought hit me...

What is it like for someone with CF to not be doing any kind of activity and they experience laboured breathing? Someone with CF has to get their chest tapped, take expensive medications, and seek medical treatment for something that should come to them normally. Yet while they are on dry land, they feel as if they're drowning. 

There are a number of people in Barbados who have CF who for them trying to grasp a breath, get nutrients from their food, and taking a buffet of medication has been and continued to be their daily routine. 

Thankfully, one of our eldest sufferers is progressing through school and we have recognized that soon they will enter college/workforce. The challenges then change since while growing it took the salaries of two parents and supportive insurance companies to keep them alive, while barely making ends meet. That changes as they enter the workforce, parents retire/age or just are unable to work any longer. How can we ensure that this CF sufferer has a quality of life where their healthcare is not forced into a state of compromise to CF which is deadly? 

When you walk/run this year, encourage others to participate. Can each one bring at least one? Even though we will walk/run, see old friends, meet new acquaintances, we must keep the opportunity to build awareness in the forefront of what we do. 

We are The Cystic Fibrosis Foundation of Barbados, taking on the life-changing experiences of living with CF. We intend to remain committed to what we do since we are Aware to Care! 

Please register early and encourage others to do the same. Let's make this the biggest one ever on July 7, 2018. Details are on the website. and within social media. 

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.

The 2017 walk/run fundraiser

Every year The Cffb raises funds for those who have to deal with the challenges associated with Cystic Fibrosis [CF]. These funds help the patients and their families better cope with the financial challenges, which are quite high, associated with caring for the illness.

Every year, the foundation has to draw on the willingness of various individuals, groups, and organizations who volunteer in one way or another to help sufferers cope.

Even when assisting those who are ill, there need to be some moments of levity that helps to bring people together. Without exception, our Walk/Run 2017 was again helpful in further building bonds of friendships. See pictures from this year right here! You can look for your friends and colleagues while contemplating how big your group will be for 2018.

Making a difference with CF care donations

Living with Cystic Fibrosis [CF] does not only affect the individual suffering from the illness, it impacts their family as well. The adaptations of lifestyle are noticed especially when older siblings then have to care for younger ones who may sufferers since they have to be more attentive.

Apart from the excess care of loved ones, financial care is really needed as CF demands that the sufferer takes medication and treatments that are quite expensive; even for a two (2) parent household.

The Cystic Fibrosis Foundation of Barbados [Cffb] was established to build awareness, assist with care, and contribute towards finding a cure as capacity is built. Functioning under the slogan of "Aware to Care", The Cffb has been raising funds tirelessly; each year trying to surpass previous levels of contribution as the costs of care continue to escalate.

So far, the assistance being provided is but a trickle by the organization's estimation as so the focus is maintained to build awareness and generate more opportunities for offering care.

Pictured above are parents of children with CF receiving their care package contributions by the Treasurer, Ms. Linda Foster for the year 2015.

In 2017, by the Cffb not having the gala dinner, the organization is faced with the challenge of raising necessary funds to provide for the children whose overseas doctor visits are rapidly approaching. In essence, we want to make a substantial difference in our donations and exceed what we have donated in the past to those families who need urgent assistance.

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!

The responsibility of a charity

Though a charitable organization's main purpose is not a profit motive, it is important that a businesslike approach is taken to running such an organization in order to ensure continued support from those who serve and those who are served.

What does this mean?

In short, here are a number of aspects the leadership of a charity need to consider.

• The leadership structure and roles are sound with clear lines of authority and responsibilities. 
• There must be great document management and file storage. 
• Meeting minutes need to be out around 72 hours of the last meeting. This so the discussions of the meeting can be expedited in time for the next meeting. 
• Volunteers need to understand that they are accountable for what they have promised to contribute. There really is no room for people to lag. If you're unable to adequately contribute; you may actually be a hindrance rather than a help. 
• You accounting and accountability should be current. Complete with audit reviews on an annual basis. 
• Databases need to be current, these include: volunteers, sponsors, donors, supporters.
• Correspondence must be well managed, stored, and traceable. 
• Meeting participants need to arrive promptly, contribute wholeheartedly, and leave with clarity as to what's required of them by the next time there's a meeting. 
• Training needs to be ongoing, complete with a train-the-trainer program. 
• Budgets should be established to ensure that the organization adequately plans for the needs to further their cause. 

Though this list is not exhausted, you begin to get an idea of the vast responsibility required to ensure the smooth functioning of a charity. 

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.

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!

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. 

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!