A Heart Foundations Gratitude to ‘Cabinet Trends and Design’!

Some lead with their right foot to get them to where they’re going…Chris & Richard over at Cabinet Trends & Design lead with their hearts and make community outreach a priority, specifially they have made the Tetralogy of Fallot Foundation Inc., a heart foundation’s goals possible! The foundation is small but it has a big name and a lot of work to do. With Cabinet Trends & Designs help, they are oficially going international!

Last May, Jay Risk, the TOF Foundation spokesman was asked to Speak and also become the Official Moderator of Florid’s Largest (Medically Accredited) International Cardiology Conference ‘Cardiology Conference 2016 – Orland’, themed “Clinical and Experimental Cardiology”. While Jay was moderating all 3 days, on day 2 he spoke for a full hour on the subject of ‘The Long Term Effects and the Congenital Gap’, which proved to be quite important within the scientific community and to the patients who live with the heart condition ‘Tetralogy of Fallot’.

Due to the success of Jay’s presentation and their foundation’s research (Most of which was headed by Jay’s wife Stefanie), following the conference, they were invited to speak in Las Vegas, NV – November and in Rome, Italy in December of 2017. Conference Series LLC. (The global conference company who produces the above professional conferences, do so to offer medical accreditation and continuing education from the CPD, CME and the AMA for national and international medical professionals) …The conference company itself offered to accommodate the ‘Tetralogy of Fallot Foundation Inc.’ fully within their power, which includes; costs of speaker fees, accreditation, publishing, hotel, food and technical expenses which are costly to anyone wishing to attend and present their research. The costs of these conferences are pricey mainly because the accreditation and the scientific peer review & publication process, the time itself to present and the presence at the venue is heavily regulated, structured and taking time of those valued as some of the most leading Doctors and Surgeons in the world.

With the invitation open to attend and be accommodated, The Italy conference became extremely important because their Spokesman Jay Risk and their Vice President Stefanie had met an Italian Bioengineer who has been working on a revolutionary valve that would grow with children or adults and cut down on the number of open heart surgeries heart patients have to endure. Jay, Stefanie, the Foundation and the one’s around them were so happy! Excited! They were to present, go global, impact the medical community, and make sure this new-to-the-world heart defect finally had a voice! Then reality struck. The were accommodated EXCEPT for travel expenses.

The conference company had offered the ‘Tetralogy of Fallot Foundation Inc.’ such a wonderful opportunity at such an important venue…It simply cost too much to still then, fly them in. THIS is the equivalent of living in Europe, signing with the NY Giants to play in the Super Bowl but, you had to provide your own flight to the game.

This was devastating. All the foundation could do is work. Pound on doors, call, email, ask for help but little came in because their foundation isn’t this HUGE institution that companies LOVE to attach their name to – to show they’re “Amazing” for “Donating” and “Caring”…But upon showing so many international companies, institutions, private backers…They all LOVED this, but again, it came down to political light being shined BACK on them to show the world , “HEY…I’m a great person! I donated!”

This is where Chris Nichols and Richard Demarest of ‘Cabinet Trends and Design’ come in. …Lee County, Florida. Florida. The United States…You should know that these 2, this company, came to the rescue and made speaking to the world possible! ‘Cabinet Trends and Design’ donatedenough money to cover ALL travel expenses, FOR the expenses which ensures, the world will hear what they had to say. …After all, the ‘Tetralogy of Fallot Foundation Inc.’ does have leading research. We are on the forefront of medical technology for CHD patients; developing wearable medical devices, medical systems, growing the fields of Adult Congenital Medicine (Which there are currently less than 500 Adult Congenital Dr.s in the world), finally giving this condition a voice, spreading education and awareness, building a National and International TOF Network which directly helps those and their families affected by TOF…We developed Pilot Programs such as “Paws for Patients” where Service Dogs go to hospitals to help patients. We also developed “Laugh to Health”, a program where local and nationally touring Comedians go to hospitals personally and cheer up patients and families. We have recently aided in the adoption of a child with TOF, and are currently working on bringing in an international patient to Philadelphia for life saving heart surgery!

Cabinet Trends & Designs has made this trip possible.

The ‘Tetralogy of Fallot Foundation, Inc’, Jay Risk and his Wife, Stefanie, all the patients and families who depend on this voice being heard, wish to thank Richard Demarest and Chris Nichols or ‘Cabinet Trends and Design’ immensely for their contribution to the future of Tetralogy of Fallot and Congenital Medicine. Without Richard and Chris, the foundation would have a foot in the door and no way to get there, progress would be stunted and there would only be side effects left, impacting those living with the condition and their families who have to endure all the emotional gravity this condition places on them being, this is a life or death condition.

‘Cabinet Trends and Design’ Richard and Chris…Thank you. We say this as a foundation but I say this authorizing this article and co-writing this part (With my wife Stefanie) which pays the tribute to your kindness and generosity personally. I say this as a patient with 4 open heart surgeries. I say this as a survivor. I say this as a husband and I say this as one who speaks for the 1.2 million in this world living with this condition. 1.2 million yet only 500 Adult Congenital Doctors in the world and it took until 2012 to finally open the fields of Adult Congenital Medicine. I say this because we have a long road ahead and you just enabled us to build and help save lives. I wish, Stefanie wishes and on behalf of everyone who helps us with the foundation…Thank you from the bottom of your hearts. The importance of this impacts the world and the lives of others directly.

In life, you never know what opportunities and successes lie behind door number one or two, etc… In this case, door number 834 was the door to life….We tried everything to no avail. To understand the impact that our heroes made, it’s important to know that when a Tetralogy of Fallot patient is born they are born with a standard 4 congenital heart defects. Some patients have one or two extra defects, some actually have less and yet are still diagnosed with this condition…That’s how little these Doctors know.

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Read More About the Condition and the Importance of What ‘Cabinet Trends & Design’ Did for So Many

The Condition

The biggest issue, in terms of quantifying the severity of the condition, or even the individual severity of each patient’s for of the condition (Excuse the pun), is narrowed down to a patients heart valves. The heart has many valves (pulmonary, tricuspid, bicuspid, mitral) and usually these are incompletely formed, narrowed, or aren’t connected to other areas of the heart making it very difficult for them to breath and for their hearts to pump properly. At several hours old these newborns undergo their first open heart surgery, months later they receive their full repair and receive their childhood valves. On average these valves last 8-15 years, give or take. From there they receive their adult valves. These patients typiclaly need 3-7 open heart surgeries on average to live a full lifespan. Compounding that, the body can also only handle so many surgeries, that even the built up amount of scar tissue alone can render the patient high risk. What Chris and Richard did is allow us to go and work to cut back on surgeries, saving lives, all because of special valves and continuing or certifying education which the ‘Tetralogy of Fallot Foundation Inc.’ is advocating for in front of the world!

An older patient who is a child or child going into their teens (We say “Older” because some patients are having surgery at less than 24 hours old….8 Years later is…”Old”) receives a new valve which will likely take them until they will be transitioning from their pediatric to adult medicine…Meaning, from pediatric or adult treatment. …Just one problem, there are less than 500 adult congenital cardiologists in the world. These newly adult patients are being overseen by two doctors. Cardiology states that they are “understaffed” yet they are using a team approach to treat 1 patient. The pediatric doctor who knows the teens anatomy ideally and a general cardiologist. Unfortunately, in that transition, 53% of them have major complications or die.

The valve that the Tetralogy of Fallot Foundation is projecting to return with an important piece of hardware in hopes to show the United States how important this certain engineered valve is because it grows with the child. If the child or young teenager already has this valve, it pretty much dissolves the need for adult surgery, it just may be the answer to TOF patients risks…That’s 53% more lives saved or complications reduced from trauma or death caused by the above. A TOF patient will most likely *only* need 2-3 surgeries instead, depending on their health and anatomy. In this case, Cabinet Trends & Designs’ truly becomes a hero to more than just us, but to a community of young and old heart patients.

There are 40,000 Congenital Heart patients born each year and Tetralogy of Fallot is one of the most common, as we share some of the other conditions which also involve repairs and replacement of valves as well. These children come into the world fighting, they don’t know what is behind door number 1 or door number 2…What we want to be able to tell them, and their parents is that, there is a full life without the need for so many surgeries…Maybe even one day, eliminating surgery at older ages. We want to try and eliminate or severely cut down on the Post Traumatic Stress Disorder caused by hospitals, surgeries, testing procedures and the daunting amount of cardiology visits. We also want patients to live a relatively steady life of being able to breath normally. We are hearing all too often that older patients are told “This should be your last valve replacement”, hoping the patient is a candidate to have it ballooned open. Unfortunately, this is not always the case. We are here to try and make life easier for patients…Even help them live longer. Those that have a murmur or have arrhythmia issues, the anxiety of ICD implants, the testing, the traumatic recollection of your life as a patient, constantly feeling like you’re living until your next valve, that you’re living on borrowed time…We want those feelings gone. ‘Cabinet Trends & Design’ is helping us deliver that hope, that life, and that peace.

SPEAKING AT CARDIOLOGY CONFERENCE

KAY JEWELERS

MODERATING CONFERENCE1

Thank you ‘Cabinet Trends & Design’, thank you Richard and Chris for your contribution to our Foundation, a community of heart patients, and future generations that fight their way into the “zipper club” and thank you for being a warrior for them and for driving your buisness with your hearts, so door number 1 can be opened to a life of happiness!

Thank you. On behalf of all the patients, the foundation Stefanie and Jay Risk…We wish your business all the success in the world. Thank you and we love you for that.

• Stefanie & Jay Risk

Original Post From https://survivetof.wordpress.com/2017/05/08/cabinet-heros-a-heart-foundations-gratitude/