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. 

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.

Complacency is not an option

Cystic Fibrosis [CF] is an illness that presents situations that are dynamic. There is just not a blanket approach that can be taken to the treatment of the illness. The result is that a remedy/cure remains elusive.

To any organization that caters to the challenges of CF one thing is certain, we cannot become complacent. When we do something one year and it becomes successful, we cannot adopt a cookie cutter approach and decide that this particular approach will be taken from now on. We like the illness that we are addressing must evolve, we must do more.

In earlier days, we held the gala fundraiser, it became an event that many looked forward to on an annual basis. It grew in popularity and reputation, but the benefits derived fell. Instead of making money that could be contributed to the cause of aiding those who suffer from CF, the organization itself began to suffer from the associated costs.

So then, we have had to seek alternate ways of raising funds. Is it easy, certainly not by the stretch of our imagination. Daily we recognize the reality of Luke 10:2, where it says, "The harvest truly is great but the labourers are few". We have to heed the second part of that verse which is to ask for others to come help.

Can you contribute? Yes, you can!

There are committees and sub-committees where so much needs to be done to be compliant. We need think tanks where ideas for fundraisers are developed that would keep our supporters engaged. We need to have ongoing fundraising since it is not only our desire to help the sufferers but to raise awareness, contribute to our global effort of finding the ever elusive cure(s). The ever expensive and necessary medication which those affected by CF needs every month.

We also need to race against time, since as we win the "battle" in keeping people with CF alive, we have to develop programs for when they age, since jobs would not be able to pay them at the levels they require to maintain the costs of medication and care that make parents stagger financially and emotionally when they have to provide for those with CF within the family, while still maintaining the other elements of family life. 

We have to cope since family situations change due to the stresses resulting in breakdown of the family via divorce, pending retirement, job displacement, rising costs of living, and fuel costs that make airline travel for medical care even more difficult. The amount of moving parts to be considered when dealing with caring for someone with CF can be overwhelming if not put in perspective with the required and welcome assistance.

How can we address these various scenarios? Only with the grace of God, and the help of volunteers. We need you. Please, register today with us indicating your areas of strength that can help us advance our fight against CF.

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

Gratitude

Have you ever taken the time to count your blessings? You will be amazed at the things that are often taken for granted by others that can mean life for you. At the Cffb we are fortunate for the following:

• To have supportive families and friends being instrumental in assisting in realizing the vision of the Cffb for those affected by Cystic Fibrosis (CF) 
• To live in an era of social media so that we can get our messages out to educate people about who we are, why we do what we are doing, how they can help, when we need to do so, and what are the areas of challenge we face as an organization that prohibits us from doing more for those who are afflicted by the illness. 
• That we are gaining recognition locally by the medical fraternity
• That donors, sponsors, and supporters generally recognize that we are doing everything, within limitations, to function as a bonafide charitable entity
• That we have the interactions and advise of the wider global Cystic Fibrosis bodies that keep us focused on and educated about what we should be considering in our fight against CF
• We are able to embark upon another year with teams of excited and thoughtful supporters who will attend our events and activities to ensure that we realize targets set to assist those who suffer from CF

While we say thanks for all you have done in any way for us up until 2017, we look forward to interacting with you during 2018 as we strive to meet and exceed previous targets. We wish you a happy and wonderfully blessed new year. Thank you for being a part of the teams that serve to win victories over CF.