Fwd: How to cure CF in 7 simple steps.

[Guest guest]

>

>Subject: How to cure CF in 7 simple steps.

>Dear friend,

>

>I always thought Viktor l had it right when he

>wrote “to live is to suffer – to survive is to find

>meaning in the suffering.” He was probably talking

>about life’s defining moments. They are the moments

>that change the course of your entire life.

>

>Most of the really big ones come out of the blue on

>some quiet afternoon. You have no warning, and you

>don’t see it coming and then BHAM! – you find yourself

>lying on the ground, with the wind knocked out of you

>wondering what happened – and even later – wondering

>why it happened? You’re not the same afterwards.

>Because of the experience, you’ve changed. Your life

>has a new benchmark and as a result, a new path opens

>up. It may be good or bad – it’s basically up to you

>in how you choose to process it.

>

>I would have to say that for our family, one of these

>defining moments was the diagnosis of our 3 month old

>daughter with cystic fibrosis. Even though it is was

>nearly 16 years ago, I still clearly remember the

>scene. It was a quiet Tuesday afternoon, had

>spent that last week in hospital under observation as

>a result of being underweight and generally unwell.

>Rob and I were led into a small interview room with

>two pensive looking doctors. Over the course of the

>next 30 minutes they did their best to explain what CF

>is all about in a way that wouldn’t scare the pants of

>us. I still remember the almost surreal nature of it

>all – then the shock, disbelief, the information

>overload, the guilt, the sadness, the “why us”

>feelings. I also remember having to tell our parents.

>We found that very hard – mainly because we knew they

>would also experience similar emotions.

>

>As they say time heals, and yes after time, I wouldn’t

>say that we got over it, it was more like we got used

>to it. Having a child with a disability, was now not

>something that seemed to happen to other people, it

>had happened to us.

>

>Looking back, this unexpected detour has definitely

>made us more compassionate people and we don’t sweat

>the small stuff as much – we appreciate and are

>grateful for the simple things in life as well. This

>new journey has taught us to slow down and appreciate

>each day and that’s not a bad thing. More people

>should do that. Now when we see families with

>physically and intellectually disabled children, we

>think – …”gee that must be hard – we are so lucky.”

>

>Our family has definitely had its ups and downs as a

>result of having CF. It hasn’t been easy for

>her or us. It’s definitely not for the faint hearted

>and something I wouldn’t wish on anyone but when it

>comes to your own children what choice do you have?

>You basically have to get on with it and be strong for

>them.

>

>CF seems to be a process. In ’s case, a

>relatively slow process. None the less CF inches

>closer every year - steals a bit more lung capacity

>here, and a bit more pancreatic function there, a

>worsening cough and a bit more clogging up here. It is

>mostly in the background minimized, disguised around

>daily routines of medication, physio and diet until it

>decides to break out to cause havoc for a while before

>going back into the background to plan its next move.

>It doesn’t sleep; it is constantly there, both

>physically and emotionally.

>

>About 18 months ago we were once again reminded of the

>personal cost CF takes, when, Eve, who also attended

>the same school as , passed away. She was only

>16. Eve was one of those quite amazing young people

>who was very bright, capable, mature, popular and wise

>beyond her years.

>

> managed to write Eve a letter a few days before

>she died and after her funeral Eve’s Mum wrote back –

>I have included some excerpts:

>

>I thank you for your letter. I know it was for Eve’s

>eyes only but I had to read it to her. She lay

>quietly, listened and wanted me to thank you. She

>wanted me to tell you to take every opportunity in

>life, that CF is only part of your life, that in

>reality for Eve, caused problems, but were pushed

>aside so that she could simply enjoy all that her life

>had to offer.

>

>Eve was a much fulfilled young woman, and only in the

>last few months of her life did she really feel that

>CF had presented her with challenges that she

>struggled to meet……

>

>One of the hardest things for Eve was not being able

>to have physical contact with the fellow CF’rs like

>you and Kimberley, but I know that she chatted to you

>both in the doorways of Ward 18…

>

>….I am sure, like Eve, you will face the challenges

>of CF head on. Be strong, do not let it take over

>your life, take all the opportunities, take risks,

>life is to be lived, simply enjoy……

>

>Eve was comfortable and surrounded by all her loved

>ones when she died and looked so peaceful. She was

>not frightened but, complete.

>

>We loved Eve and she gave her love freely, we miss her

>immensely.

>

>Lots of love Trish (on behalf of Eve)

>

>We also miss Eve very much.

>

>I remember when the researchers finally found the CF

>gene – the media excitedly announced that genetic

>engineering may be able to provide a cure in about 10

>years – that was nearly 15 years ago. I’m tired of

>wondering when will a cure be found and I suspect

>thousands of other families around the world are as

>well. ………sick of waiting for a cure, sick of seeing

>other kids and young people dying of CF, sick of

>worrying about the future, sick of hospitals, sick of

>IVs, drugs, medical equipment, seeing doctors,

>physio, clubbed fingers, sputum, coughs, antibiotics,

>vitamins, tubing, needles, cross infection, fragrant

>loos and loose poos and funerals.

>

>Mostly I’m tired of standing by helplessly watching

>and waiting for CF to continue to take its course. If

>the cure isn’t found then we know how the story will

>end. We have seen it happen to others. Amazing

>children and young people who have gone too soon.

>Surely enough young people had already sacrificed

>their lives for this? Enough families have been racked

>by grief and there has been enough suffering?

>

>So what is the point of this, why I am writing this?

>Why has this e-mail miraculously ended up in your in

>box - sent to you because your life is also touched

>by CF?

>

>It all comes back to defining moments. Collectively

>our global CF family has grieved and suffered and

>labored enough. It is time to take action. No more

>sitting back and waiting. It’s time of everyone to

>take action. Not in a small way but in a huge

>collective, global, international, planned and

>coordinated way to help all CF families everywhere.

>

>No matter where you’re from, if your life is touched

>by CF, you are part of our huge international family.

>What we have experienced as a family in a small

>country called New Zealand won’t be unique. Thousands

>of other families all over the world will have had

>similar stories and experiences. Having your child,

>nephew, niece, sister, brother, grandson, or

>granddaughter diagnosed with CF, unites us all.

>

>So what needs to be done?

>

>In simple terms, to help our global CF family we need

>to do two very basic things:

>

>1. Ensure all our national CF Associations are funded

>and supported.

>

>This allows them to continue to provide the real time

>“here and now” support to people with CF when needed.

>We need them to provide support to pwcf and their

>families at the right time, to the right level, for

>the right things in the right quantity. Do you know

>what your local and national association does provide?

> What can you do to help? If you don’t think they are

>doing the right things, then when was the last time

>you provided feedback?

>

>Our associations also need to be funded properly so

>they can stop worrying about where the next dollar is

>coming from and just get on with supporting those who

>need it. Worldwide we probably have to come up with

>come up with a million million dollar ideas to

>generate multiple streams of income to support them

>all.

>

>………need ideas such as …….find ways to reduce CF

>families household expenses by 20% eg. budgeting

>advice and software, tools to reduce debt, bulk buying

>discounts, cheaper medical supplies, teach smarter

>ways to invest etc. Then ask CF and extended families

>to direct fund or tithe 10% of their household income

>to CF. This way they are still 10% better off and the

>CF associations and research projects are funded.

>

>……another idea……..check out what Kertcher is

>doing with options trading for CF at

>

>http://www.platinumpursuits.com/

>

>on the left hand side, look under the Children’s

>Charity Challenge - Platinum Pursuits Foundation.

>

>And the second most basic thing we need to do?

>

>2. We need to cure CF.

>

>Not find another treatment - we need to find the

>cure. Eventually, one day a cure will be found. This

>will happen if we continue on doing what we are doing,

>which is essentially waiting for someone else to find

>it. The down side is that each extra day it takes,

>each extra day we wait, takes a toll on members of our

>CF families. Some just can’t wait.

>

>We need to stop waiting and accepting, and making

>excuses, we need to take massive global coordinated

>action.

>

>So how would we actually find the cure? Over the years

>I guess we have all given this subject considerable

>thought. Well here’s a start. For simplicity it has

>been broken down into a list of seven.

>

>How to cure CF in seven simple steps.

>

>Step 1. Have a clear and compelling goal.

>

>We need to know exactly what we are aiming for. Have

>you noticed that when humans really put themselves on

>the line amazing things happen? The world’s greats

>have all done this – Mandela, Mother ,

>Mahatma Gandhi – they all had inspiring and purposeful

>missions, and lived their lives purposely and

>authentically to achieve them. Our own kiwi great Sir

>Edmund Hillary wasn’t a wandering generality when he

>conquered the world’s highest peak – he knew what he

>wanted – he has meaningful specific!

>

>Here is just one example of a meaty goal for our

>global CF family……….

>

>“To find a cure for CF no later than June 2009 (the

>20th anniversary of finding the gene).

>

>Step 2. Recruit the world’s best researchers to find

>the cure for CF.

>

>Find excellent people from a variety of disciplines

>and give them three to five years support and a clear

>target. Make sure they are well led, and supported

>and have them engaged into the mission with their mind

>body and spirit. As you know there is already much

>research going on around the world - (click here to

>see a list of some CF researchers working for us now)

>

>http://www.stanford.edu/%7Ewine/CF-Researchers.html

>

>

>Some questions that naturally flow from seeing this

>website ………….. Do they (researchers) know what

>everyone else is doing and working on? Are they

>duplicating stuff? Can this be coordinated better?

>

>If we are going to do something globally, how will it

>fit with existing efforts? What are the unfilled

>gaps? How do we get “buy in” from key people

>(clinicians, scientists, parents, pwcf, associations?)

> Who will provide leadership and make sure it stays

>on course?

>

>To get some answers on these sorts of question we will

>need to get together a small group of researchers as a

>start point – say six or seven of the best people in

>the field, in different disciplines. I know that Prof

>Bob on (Director of the Murdoch Children’s

>Institute Melbourne, Australia) comes to NZ on a

>regular basis with the Liggins Institute. So a quick

>and cost effective way is to get a small group –

>mainly Australasian participants for convenience, who

>are able to devote a few days to this. Have an initial

>meeting in January which is a time when people may be

>back from their xmas break but yet full on at work.

>Have a second meeting with a larger group of

>researchers either before or after the UK CF

>conference in June, and then one in the US later in

>04. That way we cover the globe and fit in with the

>overall international CF circuit which many attend

>anyway. You could also get a small group of really

>keen parents/siblings/pwcf to meet at the same time

>to discuss the other issues.

>

>Step 3. Fund it properly.

>

>Generate funds to support not only the researchers to

>find a cure but also the CF associations so they can

>continue their work in supporting those in our CF

>family who need it. Come up with the million million

>dollar ideas to lay down multiple streams of income.

>

>The funding also needs to be independent to support

>the research. Much great work has and is being done by

>pharmaceutical companies but their input is largely a

>business decision. It is extremely costly to bring a

>new drug or treatment into the market and naturally

>enough the drugs research and development costs have

>to be recouped somewhere. If we are collectively

>serious about finding a cure then we need to get

>funding which has no strings attached.

>

>Step 4. Work together as one global team.

>

>The way forward is through fruitful international

>collaborations. Have every country with a CF

>association working towards the same goals. Have a

>plan that is well developed, communicated and

>coordinated. If something doesn’t work then try

>something else.

>

>Think about projects on a global basis, not in

>isolation, maybe useful things like, develop an

>internet based intranet for doctors with everything

>they need to know about CF.

>The reality is that many pwcf are seen not by CF

>specialists, but by pediatricians. They can’t be

>expected to know everything about CF. Survey doctors

>with CF patients, from different countries and ask

>them what they need. Then provide them easy access to

>that information. Make it relevant, up to date and

>have an ability for them to ask other CF specialists

>around the world when they want another opinion.

>

>Perhaps also provide another site aiming at the

>layperson who wishes to be proactive about their own

>or family members CF medical management. Some folk

>won’t be into this at all, but at least give them the

>choice. This innovation alone could save lives and

>improve treatment for our CF family.

>

>What about an e-zine (e-mail magazine) aimed

>specifically to create success for CF families?

>The theme could be “caring for the carers.” Have the

>first copy out in the new year, with “opt in” or

>voluntary membership and a website archiving articles

>behind it. Have inspirational stories of courage and

>hope as well as information and tips on how to achieve

>personal-growth goals, how to develop a positive

>attitude, how to become a better speaker, writer,

>thinker, and listener, improve general communication

>skills, how to have better relationships with family,

>friends, and medical staff, improve parenting skills,

>learn about the grief cycle as well as develop more

>tranquility, magic and simplicity in life.

>

>Have you noticed that supporting a family member with

>CF is expensive? Provide guidance on how to get out

>of debt, get control of your finances, and build

>family wealth. Provide articles about healthy living

>and looking after yourselves so that the carers can

>care for their family members. There is a wealth of

>information out there on CF. Collectively there is

>also thousands of years of experience on all aspects

>of CF. As well as improving general knowledge on CF,

>we should be inspired by wonderful stories of hope and

>courage. As an example, check out this site:

>

>http://www.breath4cf.co.nz/

>

>It tells the story of a over weight and overwhelmed

>mother of four – (two children with CF) who is now

>training for the Ironman – New Zealand’s ultimate

>triathlon race. In March 04 she will be doing a 3.8km

>swim, 180km bike ride, and 42km run. What got her off

>the couch was a Canadian, Bentley who is a

>professional tri-athlete, has previously won that

>Ironman race and who lives and competes with CF.

>Unbelievable! Check out ’s site

>

> www.lisabentley.com

>

>There will be members of our international CF family

>who can provide information we need for an e-zine such

>as this. Among our immediate and extended CF family,

>there will be financial planners, life coaches,

>accountants, counselors, motivational speaker,

>financial experts, business leaders, and many others

>with skill sets we need to provide information so we

>can all learn. The amazing thing is that if we ask

>them – they will want to help.

>

>Step 5. Work smarter not harder.

>

>Don’t duplicate resources that are already there eg.

>full use of existing admin and systems already in

>place within the CF associations. Make use of

>leverage, concurrent activity and the development of

>business and research systems which can be duplicated.

>On the admin side, have open and transparent

>operations and reporting at all levels. Have

>significant use of communications technology eg.

>websites, internet, e-mail. Have everything linked up

>so the successful things can be rolled out quickly and

>time isn’t wasted doing stuff that doesn’t work.

>

>Step 6. Take action.

>

>Get going, get moving, take the first step, then the

>second then the third etc. If nothing changes then

>nothing changes.

>

>Step 7. Have fun and celebrate success along the way.

>

>And finally, CF isn’t a funny disorder however having

>a sense of humor about it helps. In the words of Bob

>Hope " I've seen what a good laugh can do. It can

>transform tears into hope. "

>

>So what now? We need to get this show on the road –

>why wait? There is so much to do. CF means we have

>everything on line here. If we all try, if we all do

>something – even something small, then potentially our

>global CF family has everything to gain. Imagine how

>much energy will be created if hundreds of thousands

>of people are united globally for a single purpose?

>

>When this works then other genetic illnesses are bound

>to copy us – other families and other sick children

>and young people will benefit . The funny thing is

>that is all starts with a simple e-mail.

>

>So in summary, we need to do two basic things:

>1. Ensure all our national CF Associations are funded

>and supported, and,

>2. We need to cure CF.

>

>How to cure CF in seven simple steps.

>

>Step 1. Have a clear and compelling goal.

>Step 2. Recruit the world’s best researchers to find

>the cure for CF.

>Step 3. Fund it properly.

>Step 4. Work together as one global team.

>Step 5. Work smarter not harder.

>Step 6. Take action.

>Step 7. Have fun and celebrate success along the way.

>

>What you can do (your first step) is e-mail this out

>to other CF families you know. As well as that, e-mail

>one copy of this to your national CF association. The

>thing is for this to work on a massive scale – we

>literally need everyone around the world with a CF

>connection, and an inbox to “GET THE MESSAGE.”

>

>Archimedes' said “If you give me a lever and a place

>to stand and I can move the world”. Here is your

>lever. Come on - let’s go - let’s move the world!

>

>Kindest regards

>

>’s Mum

>

>PS. Please be thoughtful about forwarding this e-mail.

>If you send it to your national association – just

>forward the title and say you support the concept.

>Cut out all the message. If they need a copy they can

>e-mail you for one. We need to preserve their servers.

> If you are forwarding it to your friends please spend

>time taking off all e-mail addresses to take it back

>to its original form. If it gets repeatedly forwarded

>without good housekeeping, it will get very bulky with

>many addresses on it which increases the possibility

>of recipients getting spammed from outside

>sources…….and heck who needs more unsolicited e-mails

>about enlargement pills?!

>

>PS. If you are a person who is willing to do what it

>takes to help us to get this whole concept going then

>e-mail sarahs_mum65roses@... We need a group

>of about 40 people worldwide with reps from each

>country.

>

>PPS. If you know something about e-zines or wish to

>provide relevant and informative articles on a

>specialist subject, then please subscribe to

>65roses-e-zine-subscribe

>

>PPPS. If you can translate this e-mail into the many

>other languages that our CF family speak then please

>contact me at sarahs_mum65roses@...

>This idea needs to get to every corner of the globe

>and quickly.

>

>STOP PRESS!!!!!!!!!!!!!!!!!!!!!! – Exciting new

>developments since sending this - subscribe to find

>out…. 7stepsupdate-subscribe

>

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_________________________________________________________________

Gaming galore at http://xtramsn.co.nz/gaming !