● Frozen sweet potato fries/chips (enough for one portion)
● 1 tsp vegetable oil
● ¼ red onion, diced
● ⅓ red pepper, diced
● ¼ tsp sugar
● ½ tsp finely chopped chilli
● ½ tsp salt
● ½ tsp chinese five spice
● ⅛ tsp chilli flakes
INSTRUCTIONS
CHIPS
– Cook the sweet potato as per the instructions.
– Get a separate frying pan or wok and add the tsp of oil.
Heat on medium and when the oil is hot, add the onion, pepper, and chilli and cook until they start to caramelise (not burn), stirring often.
– Add the salt, chinese five spice, chilli flakes (if using) and sugar to the pan, stir to coat the onion, pepper, and chilli and fry for one more minute.
– Add the cooked chips to the pan, and stir to coat the chips in the spices. Turn off the heat and place onto a plate.
CURRY:
– Pour the vegetable oil in a deep frying pan or a wok and put on a medium heat. Add the chopped onions and carrot batons and cook for 3 minutes, stirring often so it doesn’t stick and burn. Add the ginger and cook for a further 2 minutes. Add the minced garlic and cook for a few seconds, again making sure not to burn the garlic.
– Add the curry powder, turmeric and the chinese five spice into the pan and mix. Cook briefly until you can smell the aromatics and then add the Smooth and give it a good stir. Pour in the vegetable stock and deglaze the pan by scraping up any bits that are stuck to the bottom.
– Add the tamari sauce and stir until everything is fully combined. Let it gently simmer uncovered for 3-5 minutes so that it thickens (or longer if you like your curry sauce quite thick).
– Put the sliced red pepper and sugar snap peas into the sauce and cook for 5 minutes longer.
– Add a pinch of salt if necessary.
– Add the curry to the plate of chips and sprinkle with some freshly chopped coriander.
Let us know what you think!
IMPORTANT: Calculate protein and Phe content of Sugar Snap Peas and Sweet Potato Fries.
Why Include Strength and Conditioning in my Exercise Regime?
Many of us may be aware that incorporating strength and conditioning into our fitness routines has many benefits and goes hand in hand with other types of training.
However some people assume the most effective fitness regime is only cardio activity (mainly running) and there is often miss-conception that strength exercises will make you ‘bulky’ and the stereotypical concept of body builders lifting weight in the gym.
It is important to understand that there are different types of strength and conditioning techniques for meeting specific goals or for general improvement / maintaining health and fitness.
Is strength training as effective as cardio?
Many studies have demonstrated that incorporating strength and conditioning programs within your physical activity regimes contributes greatly to optimising performance and fitness, whist decreasing the risk of injury and helping to prevent loss of lean muscle that comes naturally with ageing.
Of course cardio and aerobic exercises will help with fitness and maintaining healthy weight, but strength training does help too.
You may notice your fitness tracker shows a greater amount of calories burned going for a run than a strength / resistance session (depending on type and intensity of that session). Some assume this means they have worked harder and therefore this type of training alone is more effective.
Research suggests regular effective strength and resistance sessions contributes to longer period of calories burned and keeps your metabolism active post work out, longer than an aerobic activity (depending on type and intensities).This is due to improved muscle fitness increasing your resting metabolism.
However, it is important to understand that if your goal is for ‘shaping up’, don’t completely rely on weight but focus more on body composition. Remember muscle weighs heavier than fat and lean muscle provides a more ‘toned’ body composition despite weight.
If your goal is to become fitter, run further, improve stamina, or general overall improved fitness and energy, incorporating strength & resistance training into fitness programmes improves overall muscle fitness which noticeably improves aerobic and cardio fitness.
Are there other benefits of regular strength and conditioning exercises?
Yes, absolutely! Other important health benefits from Stregnth and Resistance training, include;
Strengthens bones and improves muscular fitness – Muscle strength is crucial in making maintaining strength and energy to carry out everyday tasks.
Facilitates healthy aging – Strength exercises are even more important as we get older to slow down the natural muscle lose that come with aging.
Contributes to making aerobic exercise more productive – Stronger muscles result in greater posture, movement and stamina
Improves heart health – Along with aerobic exercise, muscle-strengthening activities is proven to improve blood pressure by reducing hypertensionand lowers the risk of heart disease.
Improves balance and prevents injuries – Improved muscle fitness supports posture, balance and movement.
… And of course, overall makes you look and feel better, including improving mood and the benefits of the ’feel good’ endorphins from exercise.
How can I fit a variety of regular strength & conditioning exercises into my fitness programmes or busy lifestyle?
There are various ways you can incorporate ‘Isotonic’ and ‘Isometric’ strength and conditioning type training into your regime or everyday tasks, whilst also ensuring correct form and technique for effectiveness and safety.
In case you are wondering the difference between these movements…
Isometric
Involves contracting your muscles against a non-moving object without a noticeable change of length and the joint doesn’t move.
Examples: Plank, Wall Sit and some Yoga poses.
Isotonic
Involves contracting your muscles through a range of motion, changing the length of the muscle through concentric or eccentric contractions.
Example: lifting a bicep curl, concentric (shortening muscle) to curl up, then eccentric to curl back down.
As lockdown restrictions are easing, allowing use of Gyms, swimming pools, sports facilities, exercising in groups and studio classes, for many, this is providing more opportunities for a more structured physical activity routine and motivation.
However, you definitely don’t need a gym membership or expensive weight machines to incorporate strength or resistance training to your routine, you have a lot of options, using weights, resistance bands, household objects body weight movements, or using your own body weight as resistance.
Examples;
Squats
Lunges (forward, backward, lateral etc)
Glute Bridges
Wall sits
Push-ups
Bicep curls, triceps dips, shoulder press, lateral raises etc.
Planks
Bear Crawl
(See previous blog post: ‘Looking after You and PKU – Exercise Benefits’ for more tips on this and check out Cambrooke’s ‘Thrive in 5’ booklet)
My Top Tips for Strength and Resistance Training with PKU
All types of fitness ties in with a healthy and nutritious diet.
Consuming the right nutrients and staying hydrated afteryou exercise is just as important as what you eat and drink before. Particularly carbs and protein after workout for efficient muscle repair and restoring glycogen.
So carbs is pretty easy to tick off in the PKU diet
… however, many comment on how PKU patients are able to consume post-workout protein when following a low protein diet.
Note that PKU prescribed supplements has protein in but minus the one type we can’t process, ‘Phenylalanine’. So the other proteins within our formula make up for the natural protein others would typically consume post-work out…
…therefore, I find taking PKU supplement with a healthy snack and a drink to rehydrate within about 30 mins post work-out allows muscles that have broken down during the session to repair quicker and to refuel glycogen stores.
Time PKU supplements and healthy meals / snacks throughout the day to allow for optimum energy and recovery.
Experiment with what works for you and your fitness routines, you may find focusing on pre and post workout nutrition and timing of nutrition not only increases your energy, stamina, stregnth and performance, but may also noticeable reduce any DOMS (delayed onset of muscle soreness)…it does for me.
Try to make time for rest days and good sleep – Although this can be difficult with hectic lifestyles, rest days are just as important when working out to allow muscles to rebuild and grow, replenish glycogen stores and help re-optimise the nervous system.
Plus of course you will feel more energised, refreshed to stick to your exercise routine.
In addition to the benefits of strength and conditioning mentioned above, incorporating the many different types of exercises keeps your fitness routines varied and fun.
As a PKU adult, working mum with a busy lifestyle and currently home-schooling, I understand the challenges of keeping on top of juggling work, life, parenting etc. plus finding the time to try to focus on ourselves and keep our phe levels in desired range. This can often lead to stress and anxiety, which is noticeably heightened when phe levels aren’t fully controlled.
One way I manage this is through exercise. My main hobby is distance running, I run most days and enjoy being outdoors. My experience and background of growing up with PKU combined with my passion for health and fitness stems not only from my natural enjoyment for it, but also because of the noticeable benefits of keeping active has on mental health and wellbeing which in turn can help balance the pressures of everyday life.
My passion for wanting to help people, by sharing and promoting these benefits, and to achieve their fitness goals, has lead me to a career in health and fitness. I started out as an exercise to music / fitness instructor, then took my studying further to gain a Level 3 Personal Training qualification.
I am pleased to share a series of blog posts, focusing on the benefits of exercise, my experience of balancing an active lifestyle with managing PKU, plus how to stay motivated during difficult times and during periods of bleak, cold weather. Along with tips and tricks for creating your own workouts and staying active.
Benefits of movement and exercise
Many of us within the PKU community understand and can relate to how symptoms of high phe levels or living with the restricted diet can impact mental health. Whether you’re a patient, a parent or carer of someone with PKU, as with other conditions and aspects of life, there may be times when you feel the struggle to keep the condition and symptoms under control and not let it control you.
Many other factors can also lead to stress and anxiety disorders, which I find these can also have an impact on my phe levels as well as being heightened by uncontrolled phe levels too. This is when we can sometimes find ourselves in a bit of a vicious circle.
Also, I sometimes hear comments that following a PKU diet limits our physical ability to achieve fitness goals. I have received comments myself around the misconception of PKU and fitness…
such as…
‘How are you able to lift weights, train and have the stamina and endurance to run marathons when you follow a low protein diet?’
My answer is usually …
‘PKU is a low phenylalanine vegan type diet. Our prescribed formula provides required amount of other proteins / amino acids and nutrients, to provide us with as much adequate required nutrition as those without PKU.’
My studies and career in fitness has enabled me to better understand how healthy and beneficial the PKU diet is. The diet provides various nutrients to fuel optimum levels of physical performance and fitness. It can be really easy to fit the recommended 5 portions of fruit and veg within the PKU diet – check out the useful cooking demos and resources by Cambrooke which proves this!
Along with individual measured required amount of protein substitutes to be used for body and brain functions, providing energy, focus and helping to repair, grow and maintain muscle as well as optimising concentration and balancing mood.
Challenges
One thing that can be challenging, is achieving the correct balance of activity intensity with the nutrient requirement to achieve stable phe levels within desired range. By this, I mean we may notice links between the type, intensity and duration of exercise and energy consumption to avoid cactabilsm (which causes high phe from muscle break down).
Therefore, as with everyone, quality, quantity and timing of nutrition is just as important for our bodies as well as our mind. This emphasises the importance to re-fuel with healthy carbs, including fruit and veg and prescribed protein substitutes.
I certainly notice, reduced energy, performance and slightly increased post-exercise muscle soreness if I have missed any protein substitute. I aim to time my substitutes within a short time frame post – exercise and evenly throughout the day for immediate and on-going recovery, and protein synthesis. Plus consistent mental focus.
Although following the low phe diet and taking supplements has noticeable benefits on our physical and mental health, we can still experience periods of low mood and mental health symptoms. Especially during difficult times and stressful situations.
It is important to be kind to ourselves and make time to focus on our own health and wellbeing.
Looking after ourselves will help us look after others and manage our every-day responsibilities and challenges of life, work, education, relationships and to generally thrive.
There are techniques to help manage our health and wellbeing including, exercise, outdoor activities, positive thoughts, keeping connected and acts of kindness.
When I say exercise, this doesn’t mean hours of intense exhausting sessions in the gym. Any type of daily activity or movement that raises your heart rate contributes to activity and maintaining a healthy lifestyle.
Tips
So as I sit here sipping my first PKU supplement of the day, after an early morning run and exercise session, I can straight away feel the benefit of this energy boost for focusing on the day ahead and would like to share some top tips with you…
Try to fit in at least 150 minutes of moderate intensity activity a week or 75 minutes of vigorous intensity activity a week (nhs.co.uk)
Daily cardio activity pulse raining activity: i.e. walking, jogging, cycling, dancing etc.
More vigorous activity; running, HIIT, circuit sessions etc.
At least 2-3 strength and conditioning activities per week: i.e. weights; dumbbells, barbells, household objects, resistance bands, or body weight.
Find activities you enjoy and find time to fit them into your day.
Perhaps a hobby and even combine with a family activity
Active games
Park play
Dancing
Follow work out videos
Play sports
Take the stairs
Dog walks
Incorporate short bursts of exercise between daily tasks, examples…
Keep some weights or resistance band by desk; get in a few reps 10 – 15 targeting various muscle groups between meetings, email, home schooling tasks etc.
Get some body weight reps in; squats, planks, press ups whilst waiting for kettle to boil during coffee breaks
Get the family involved. Make it fun. Be Creative.
Join a club or connect virtually with others.
Although in the current situation, restrictions means we are unable to attend usual mixed group exercise or attend the gym, don’t let this demotivate you! There are alternatives, including online virtual exercise sessions, videos and various resources.
Uncertain times, lockdown, isolation and disruptions to usual routines has led to many losing the motivation to exercise, try not to let it de-motivate you.
As a fitness trainer, I hope to help keep you motivated.
I am pleased to work with Cambrooke on providing you with virtual online resources to follow for exercise tips and to share community motivation. You may recognise some from the ‘Thrive in 5’ booklet:
Have you been battling with decreased motivation, low energy and mood, which has led to a reduction in staying active and exercise?
I think it is fair to say we all experience this, especially during the last year when we have all been riding the emotional and challenging rollercoaster of the pandemic – which has really tested our resilience in different ways.
Be kind to yourself and allow for a gradual process to regain the motivation and fitness. One way to do this, as with other aspects in life, is to set manageable goals and challenges?
Types of Goals
Many associate goals with weight loss and comment that they are disappointed when they step on the scales and don’t see any difference after a few exercise sessions and become easily de-motivated.
Set yourself measurable and achievable fitness goals and challenges to feel good in yourself. Improved fitness will benefit your overall physical health, including weight management.
Weight related goals become more achievable as you meet your fitness goals, including helping mental health and positive mind-set with increased confidence which will help in other more long term goals such as weight.
Instead of focusing on body image, try to apply fitness goals with the objective to improve how you feel;
Stronger
Less stressed
More positive
To improve sleep
Which in turn should contribute to improvements in other areas of life and other longer term goals.
SMART Goals
S – Specific – What do you want to accomplish? Think What, When, Where, Why and How
M – Measurable – How will you track progress and measure the outcome?
A – Attainable / Achievable – How do you plan to achieve the goal? Plan a strategy to achieve desired results.
R – Realistic and Relevant – The goal should be challenging but realistic and relevant to your objectives –
T – Time – When do you plan to achieve the goal? Applying a time / deadline to achieve a result enables strategic planning as well as providing motivation and maintaining momentum to reach the goal.
Benefits of Objectives, Goals, Planning and Reviewing
Objectives are important to help define an individual customised plan / strategy, with specific goals to achieve the desired result.
Goals are important to have a target to be able to measure effectiveness and success. As well as providing focus, confidence building and accomplishments.
Fitness programmes are an opportunity to plan an effective strategy for achieving short, medium and long term health goals.
Regular reviews allow us to monitor progression and apply any necessary adaptions, enabling us to stay on track, provide motivation and make sure objectives and goals continue to be achievable.
These goals don’t need to be just fitness related, you can apply SMART goals to other areas of your life to achieve your objectives.
How to Define your Goals
It is important to think of your most important goal, rather than listing many goals. Too many goals can cause us to lose focus, leading to more difficult task of achieving any of the goals.
Needs: Start by thinking of
‘Why have they chosen to embark on a programme / plan to achieve your goal?’
‘What would you like to achieve from the programme / plan?’
‘What is your long term goal?’
This then allows the SMART method to be applied by breaking down this long term goal into smaller manageable goals.
Short, Medium and Long Term Goals
Short term: This is typically each week of the plan / programme to reach medium and long term goals. Short term goals can be identified by thinking of relevant aspects of life such as, general health and fitness, psychological wellbeing and physical ability as well as lifestyle, to allow an individualised plan to achieve medium and long term goals.
Medium term (typically 1-3 month duration): These can be identifying steps or processes to create medium goals to achieve the long term overall goal.
Long term (typically 3 – 12 month duration): Identified by thinking of overall objective for the programme and what you would like to achieve.
Importance of Recognising and Overcoming Barriers
Whilst trying to achieve any type of goal, whether it’s exercise, fitness, diet or lifestyle goals we will come across barriers. It is important to recognise these barriers and acknowledge relapse, in order to define realistic strategies to overcome the obstacles.
Try to avoid seeing barriers and any relapse as failure, but instead view these as short term challenges to overcome. This supports the importance of programme / plan reviews and evaluations, by identifying the triggers, develop coping strategies to deal with situation and plan how to course-correct a relapse.
An example of this can be to note strategies to commit to long term change including:
Social support
Listing motivational statements
Periodically review and update these motivations
Regularly charting of progression in achieving SMART goals
Ref: ‘Stages of Change Model’, part of The Transtheoretical Model (Prochaska & DiClemente, 1983; Prochaska, DiClemente, & Norcross, 1992) to make small steps towards SMART goals for gradual progression through intentional behaviour change.
Be kind to yourself, I find I need to remind myself this. Hopefully this has provided you with some motivation and tips to set yourself meaningful manageable goals the SMART way. No matter how small or big, something that is important to you. Focus on the ‘feel good’ accomplishments you will achieve at each stage of these goals.
Stay tuned for more…
Keeping smiling, keep moving, stay active and stay safe.
Best Wishes Louise, PKU Fitness Instructor
Feel free to follow me on Social Media
Twitter: @loulamaris
Instagram: @pkulou
PKU is a rare, inherited and metabolic condition that affects around 1 in 10,000 people around the world.
It is inherited because you inherit one PKU gene from your mum and one from your dad.
The body cannot break down or metabolise phenylalanine (Phe) found in protein.
A low protein diet for life, PKU protein formulas, blood-the monitoring and regular dietitian check ups are essential.
All babies are screened for PKU shortly after birth using a heel prick test.
Cambrooke’s founders, Lynn and David Paolella made it their mission to develop a variety of nutritious and great tasting protein substitute (formulas) for their children, Cameron and Brooke, and to help all other children and adults with PKU around the world. Their mission started 20 years ago and is stronger than ever today.
Despite travelling overseas being pretty much off the cards at the moment, I have still found myself dreaming about a time when this will be possible again.
I have been thinking back to some of my past trips…
Northern France and Belgium – 2012
I have always dreamed of seeing the world from a young age, so when the opportunity to visit Northern France and Belgium with school arose, I knew I had to go. I was aware that my PKU wouldn’t make things straightforward, but this didn’t change my mind.
I was just 14 years old at the time of this trip and it was the first time dealing with my diet alone – a scary but exciting prospect. My Mum and I had a meeting with one of the teachers who would be accompanying me so that she understood the basics of my condition, but we agreed that ultimately it was down to me to take charge. We also spoke with my dietitian and decided the best option would be for me to take my supplements, low- protein bread, milk and plenty of snacks that I could use up my protein allowance on at the end of the day if needed. At meal times, I would need to make accurate estimations of how much protein I was eating (the trip was only 5 days long). This really wasn’t as difficult as it sounds; I have always been very involved with my diet and so I had good knowledge of which foods were low and high in protein and their various weights. I made sure to stick to vegetarian options and the foods I felt most confident about.
As soon as I returned, I did my bloods and to my relief my results came back with very little change. This gave me the confidence I needed in tackling my PKU independently – from this moment, I knew that I could do it.
Cornwall – 2019
Then, last summer I took a solo trip to Cornwall for an entire month. This was something I had hoped to do for many years and I’m so happy that I ticked it off my list!
At this point I had completed 3 years away from home at university, so I felt more than ready to handle my diet. (I had also discovered a few years prior to this that I had mild PKU, which made my diet much easier to manage). The biggest difficulty I still faced though was how to transport a month’s worth of supplement with me. I travelled to Cornwall via the train, on a long 7 hour journey with a traveller’s backpack. There was no way of fitting 2 boxes of supplement in that bag!
However, I managed to avoid a lot of stress with some careful pre-planning. I arranged to have my supplements delivered straight to my holiday apartment so that they were already there waiting on my arrival. I was so worried that there would be some sort of mistake, but my anxieties turned out to be for nothing as it all worked out perfectly and I had an amazing trip – thank you to Cambrooke for making that possible!
Paris – 2020
My most recent trip, to Paris, was in February this year. This was another memorable occasion for me because it was my first time travelling overseas without my parents or a school teacher, and instead my 2 friends from university. We went to Paris on the Eurostar; I was most anxious to know if I would get questioned at customs about my supplements or not. I was on my own, with no parents to support me. So I took a letter from my dietitian explaining why I needed my Bettermilk powder, but even though I was covered, this didn’t stop me feeling nervous (we had difficulty with this years before when flying to Florida). However, to my relief I had no trouble at all. Still, I was glad that I had prepared for the worst.
I definitely have many more travel destinations in mind for the future – My best friend and I are hoping to go to Italy next year (if life is back to normal)! I am excited to see as much of the world as I can. Although having PKU doesn’t make things straightforward, there are always ways around problems – I certainly won’t be letting it stop me.
One food that has become increasingly accessible for PKUers in the past few years is PKU Cheese! Cheddars for pasta, spreads for sandwiches and desserts, mozzarella for pizzas, feta for salads – we are spoilt for choice! And the best bit? Not just PKUers are loving and driving this sector forward. Society as a whole is pushing for less meat and dairy and more sustainable and ethical ‘plant-based’ foods.
International PKU Day is the anniversary of two innovators and “founding fathers” in the diagnosis and management of PKU. Horst Bickel produced the very first (and probably most unpleasant) protein substitute for the treatment of PKU – he made the phenylalanine free mix for his young patient Sheila Jones over the winter of 1951-1952.
Around the world babies, and young children were tested for PKU using a urine test and were treated…but sadly this did not save them from some of the brain damage that they had already experienced before they’d been tested. Robert Guthrie knew testing or screening all children as early as possible in life, would mean children could be put on treatment before the damage was done. Robert Guthrie spent 10 years developing his screening test and travelled the world with his whole family, getting newborn screening underway.
Robert Guthrie
Universal newborn screening for PKU using dried blood spots collected onto a filter-paper card (the Guthrie card) started 1969 in UK. Horst Bickel’s treatment and Robert Guthrie’s screening meant much better lives for babies born with PKU from 1969 onwards. Robert Guthrie was born on 28th June 2016 and Horst Bickel 28th June 2018 – therefore we have International PKU Day – to celebrate these medical innovators.
Horst Bickel
What Next?
What innovations are happening now which could further improve lives of people who live with PKU? Potential PKU treatments in the early stages of development:
Gene Therapy: makes the liver able to produce the enzyme Phenylalanine Hydroxylase (PAH), by giving it the “correct” genes (in the form of DNA or deoxyribonucleic acid) to “code” for a working version of the enzyme. Gene therapy is infused into the vein of someone with PKU to allow the gene to reach their liver cells.
mRNA Gene therapy: works in the same way as standard gene therapy – it provides the “coding” for a correct version of the enzyme PAH, by giving genetic material that targets the liver and makes PAH. This mRNA (messenger ribonucleic acid) would be quicker to act than standard gene therapy (but would also not last as long as standard gene therapy – maybe needing an infusion once a week or once a fortnight)
Phenylalanine Ammonia Lyase in the form of SYNB1618: a product is based on bacterium E. coli Nissle or “Microflor” which has Phenylalanine Ammonia Lyase or PAL in it, which breaks down Phe. The bacteria can react w phe in the gut – there are extra enzymes (two different types) in the bacteria which process phe into harmless products
Sepiaterin: like sapropterin (Kuvan) and is a natural precursor to sapropterin. The body can generate larger amounts of sapropterin by giving this precursor. (Sapropterin or Kuvan, makes your own PAH enzyme work better by locking onto it, changing its shape to make it work better and the Sepiaterin will make the enzyme work better in the same way).
Phelimin: A chemically inactive material (a polymer) binds or sticks to the phe in food when taken at the same time or after eating.
The NSPKU will be taking a keen interest in how these potential treatments develop and we will ensure that the PKU community gets to hear what is going on in the world of PKU research.
To donate to NSPKU and support us in promoting awareness and supporting people living with PKU please click on this link: https://www.nspku.org/support-us/
“The NSPKU started in 1973 after Brian and Sylvia Smith wanted to contact other families living with PKU and they spoke about it on Radio 2. Fast forward 46 years and the NSPKU is a thriving charity with its own administrator, helpline, political campaign team, Twitter, Facebook and YouTube presence. In 1973 the NSPKU was tiny, now there has been 50 years of screening, and the community living with PKU in the UK is in the thousands (though it is a rare disease).”
Suzanne is the Dietitian for NSPKU and works with three separate electronic devices and three phones in front of her, all the better to tweet/skype/speak/email and type on!
Suzanne and a group of the PKU community doing some walk and talk, also known as “Step Forward for PKU” on International PKU day June 2019
Taking today as an example: Suzanne says:
“I’ve written letters to help support people with their extended travelling and volunteering ambitions, I’ve spoken to one of our most active awareness and fundraising Mums about planning an event next Spring (we’ve a long shopping list for this fundraiser) and I’m collecting prizes for our annual Spring Draw and I’ve been on the phone.”
“We have an administrator, Caroline, a bookkeeper Margaret and Kate our campaign manager – we’re in 4 corners of the UK and speak on the phone. The NSPKU has a really ‘lean’ team, which means members’ and fundraisers’ money is never wasted. We answer complex questions from our families about health, benefits, support at work, difficult issues that people face and occasions when they may want a letter or comment in addition to that provided by their metabolic team. We have our own mini network of PKU experts to call upon – the Medical Advisory Panel who are treating and researching PKU in their jobs. It’s thrilling to see the research done about PKU all the time – I try to summarise some of this in our magazines and newsletters too.”
Suzanne on the BBC – August 2017
“I’m currently planning our conference programme… we’ll have researchers, dietitians and medics speaking, but the most interesting and powerful part will be our ‘patient panel’, because this is where the most interesting experiences can be heard and next year will be no exception.”
“I often contact people saying “I think this happened to you/I think you tried this/cooked this/travelled there?” and let’s add in your real life advice to the “professional” opinion. So, I believe that I am in a team with the people I am here to work for, and I hope the community thinks this too. In truth we all draw on the amazing strength of this whole community. This strength is going to be needed in our discussions and campaigns in the future, it is so important that we progress our campaign for fair access to a choice of treatments.
Suzanne and a group of people who have PKU at the 1st birthday party of the All Party Parliamentary Group April 2019.
“There are interesting times ahead and I will be here informing and supporting. If you are reading this and you aren’t a member of NSPKU, then please join up, it is just £20 for a family or adult membership and you will get 4 beautiful magazines each year as well as e-newsletters each month. Finally: if you need to speak to me, whether or not you are a member – please get in touch – ring, direct tweet me or email me (suzanne.ford@nspku.org).”
NSPKU is here for everyone living with PKU.
We would like to thank Suzanne Ford for sharing her experience of working for the NSPKU. The NSPKU are a fantastic charity, and if you are interested in joining, which we would encourage, just visit www.nspku.org.
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