CF - The Disease that doesn't acknowledge others

 

One thing that this pandemic teaches is that whatever comes up including a pandemic, CF will say these three words: Hold my beer. 

It would then begin to show its might as to who's really at the head of the "food chain". Cystic Fibrosis [CF] will not play second fiddle to anyone, including COVID-19. 

CF is not as widely known as COVID has become, yet it maintains its status as one of the celebrities in the disease world. It's global in reach, it impacts people of various ages, it can significantly impact families and their considerations for just about everything, and it's EXPENSIVE to treat; at least here in the Caribbean where there are no resources allocated to it really. 

CF is in a class of its own. It doesn't compromise on its standards as a disease. It remains virtually unstoppable. It still is a serious illness. It still impacts entire families though it may be just one member who has the actual illness. School/work life is impacted on the part of the sufferer as well as those who interact with them. 

The expenses of caring for someone with CF are staggering. Parents often feel the brunt of the expenses until the student reaches around 18 years old or just beyond. The saga expands to show this student in post-school life can't support themselves given the demands of the workforce. 

Finding work that pays them the required amounts given their limited experiences is impossible; the allocation of unprecedented sick days is slim to none; establishing their own business that supports them immediately is at best stressful due to a variety of factors too numerous for this article, and insurance companies withhold support as they are no longer on their parents' policies but must now obtain their own.

 The limited lifespan of CF sufferers is a cause for concern. Given that COVID-19 negatively impacts those with co-morbidities; can you imagine those who catch it one way or another? The impacts for them intensify and the outlook doesn't look pretty. Their ability to breathe is further impacted negatively. 

• Without medication and medical care, the life of a person suffering from CF can be severely shortened. 
• Medications run around US$6000 monthly 
• Doctor visits are not cheap since no one in Barbados treats it, travel is required to obtain treatment for the sufferer. 
• Our foundation can help once we have the resource, but they too are significantly reduced given the suppressed market within which we are operating. 

We need more volunteers. People who are seriously committed to serve in a variety of areas. The demands of CF never stop. Would you help us today? Visit our presence and identify who you would like to assist and from when. It can be from a standpoint of time and money or a combination of both. 

The money would be things like sponsorships, donations, provision of fundraiser programs and ideas that facilitate the raising of significant sums while still being safe. Two people with CF can't even be in the same building. 

Time, we are looking for volunteers, researchers, planners, support team members, runners, writers, and a whole lot more. Make contact via our website cfbarbados.org as to how you would like to assist. We welcome your input. 

We thank you for your support over the years and look forward to your input going forward. Have an amazing day wherever you are in the world. 

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.

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. 

An Organization of Leadership

When The Cystic Fibrosis Foundation of Barbados first came on the scene, there was a lot of dedication on the part of those who founded the organization. To the onlookers, it seemed like The Cffb grew fast. It was often commented upon that our growth was faster than organizations who were many times our senior due to our age.

Immediately upon its formation, The Cffb was determined to be a leading organization. Parameters for operating was developed and implemented with a team that sought excellence. The leadership was determined to assist those afflicted with Cystic Fibrosis with the best service possible; since there are no doctors on the island who are qualified in cardiac pulmonology.

In Barbados, hardly anyone knew what the illness comprised of, CF was unfamiliar to Barbadians. The Cffb had an uphill task. So how did we get to where we are?

1. We are willing to serve. 
2. We think ahead, planning towards future situations. 
3. We take initiative, preparing to be uncomfortable to ensure the beneficiaries obtain assistance.
4. We function with a character of humility. 
5. We're constantly developing skills with people.
6. We ensure that those who depend on us are covered. 

Despite being a not for profit entity, it is necessary that we are committed to a code of excellence. We believe it necessary to give of our best in all that we do, especially since people's lives and livelihood depend on it. 

We are the Cystic Fibrosis Foundation of Barbados, and we are Aware to Care. 

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.

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. 

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!