YOUNG STROKE THRIVERS FOUNDATION PROFILE 2017

Vision

To empower stroke affected children with a positive and confident outlook by providing opportunities for them to lead an active and fulfilling life.

Mission:

To support young stroke thrivers, up to the age of 18 by providing the following services:

• Sporting and recreational activities to assist with rehabilitation to increase confidence in a fun and positive environment;

• Support networks for Stroke Children in their daily environment e.g. at home or school;

• Financial assistance for education and personal development e.g. tutoring, tertiary or overseas working holiday / GAP year;

• Creating awareness in the community around who strokes affect (not just adults) and identify the specific needs of Stroke Children

Young Stroke Thrivers Foundation CC503339 PO BOX 79-337 Auckland 0656 021 209 2964 info@youngstrokethrivers.org.nz www.youngstrokethrivers.org.nz

FOUNDERS PROFILE

Maria's fun filled life after her stroke

Founder of Young Stroke Thrivers Foundation, Maria Fredatovich, suffered a stroke at 13 years of age which left her completely paralysed down one side. A large part of Maria’s recovery is due to her positive outlook and participation in challenging outdoor activities such as skiing, mountain biking and tramping. Her rehabilitation is still ongoing nearly 20 years on!

After completing a Bachelor of Interior Design at Unitec, Maria worked and lived in London independently, travelling over 40 countries along the way.

Maria’s post-stroke rehabilitation journey has highlighted the lack of awareness, facilities and opportunities available to stroke children which led her to establish the Young Stroke Thrivers Foundation.

Maria holding her cousin, May 1996, 3 months after her life changing stroke

Maria nearly 20 years after her Stroke of Luck

BOARD OF TRUSTEES PROFILES

Michael SideyMichael Sidey …………is Deputy Chairman of Forsyth Barr Limited. He is an active sports person and supports organisations which provide opportunities for the community. ………… Michael is a director of the Halberg Disability Sports Foundation, The Otago Academy of Sport and on the Council of the University of Otago.

Maria’s positive attitude and her wish to provide opportunities to other Young Thrivers was his reason for establishing the YST Charitable Trust. Stroke NZ offers minimal assistance to young people who have had a stroke. This Trust does.

Monique FredatovichMonique Fredatovich founded Well Women and Family Trust in Auckland 25 years ago as an independent nursing organization. This has given her a solid understanding of how trusts work, their governance, and their vital role in the community at a time when funding is limited from govern-ment.

As Maria’s mum she knows the hardship, dedication and inspiration her daughter is to other stroke children. She is passionate about Young Stroke Thrivers Foundation as a means to encourage young people to explore their physical limits and to understand there are no boundaries that you don’t place on yourself!

Stephen EarllyStephen Earlly comes from a business and Chartered Accountancy background having worked in commerce, large accountancy firms and as a business owner. The result was the creation of his own accountancy firm more than a decade ago.

Stephen’s experience in governance, planning and the nuts and bolts compliments the other Trustees in the common pursuit to support Maria’s can do attitude in reaching out to young people who have had a stroke.

CURRENT ACHIEVEMENTS

• Mckenzie, aged 12, and her familiy of 4, enjoyed a 2 week adventure at Cardrona Alpine Resort Skifield in Wanaka a year after her life changing stroke. Learning how to ski, gaining confidence and overcoming new obstacles from her stroke helped teach McKenzie that there are no limits with what she can achieve!

• Amelia, Gabriel, Mily, Sofia,Tino and Zoe aged between 6 - 11 years had a great day learning to ski at Snowplanet giving them an opportunity to give it a go! Individualtraining enabled the children to develop their skills, confidence and have fun skiing.

• Mili aged 8 and Amelia aged 11, both of whom had strokes at birth, received one on one tennis lessons which built their confidence to try different activities. Tennis builds balance, co-ordination, agility, fitness, body awareness, concentration and focus with a framework of fun and social interaction.

• 13 year old Kylie who had a stroke at 3 days old now takes part in contemporary ballet and contemporary dance classes which assist with co-ordination, flexibility, timing, positioning and building body awareness.

FUNDRAISING AND PUBLICITY

Publicity to raise awareness including:• TVNZ Breakfast interview• 'Sunday Star Times' article and video • Auckland 'Western Leader', 'Otago Daily Times,' Queenstown 'The Mirror' and the 'Wanaka Sun' articles• Snowsports NZ and Tennis NZ articles • Bivouac Outdoors Newsletter article• Website, YouTube Video Clips, Photos, Brochures, Posters and Business Cards• Selling raffle tickets in Auckland, Wellington and Wanaka communities

Different ways of fundraising including:• Raffles • Collecting bucket donations during our entertaining community prize draws with an MC and DJ's • Young Stroke Thrivers Foundation Founder, Maria, setting a personal challenge= 58km, 3 days, 1610m tramping the wild and remote Gillespie Pass, Mt Aspiring National Park. A dense native rain forest, alpine paradise, steep climbs, high peaks, testing river crossings, ancient beech forest and more• Collecting bucket donations after conquering Gillespie Pass challenge• Auctions e.g. Signed All Black Rugby Ball

SPONSORED PRODUCTS

A wide variety of products for raffles including:• Icebreaker clothing• Mons Royale clothing • Outside Sports products• Marmot camping gear and clothing• Bear Grylls camping gear• Jucy car and camper van hire• New World vouchers• Mitre 10 products• Treble Cone snow pass• Cardrona Alpine Resort snow pass• Edgewater Hotel accommodation• Wanaka Luxury Apartments• Babich, Distant Land, Maude, Soljans Estate, Westbrook Wineriesand more...

A wide variety of Sponsors for respite care including:• Hilton Hotel accommodation • Cardrona Alpine Resort ski pass, hire gear and Adaptive skiing lessons• Jucy hire car• Edgewater Hotel accommodation • The Creek Cafe, Kai Cafe and Bar and Relishes Cafe and Restaurant vouchersand more...

CHILDHOOD STROKE FACTS

• The risk of stroke in children is greatest in the first year of life

• The risk of stroke from birth to age 18 is nearly 11 per 100,000 children each year

• One half of the cases are due to blood vessel problems in the brain; one quarter are due to clots travelling from the heart; and for one quarter the cause is unknown

• 20% of children who have had a stroke will have a recurring stroke

• Of children surviving stroke, 50%- 80% will have permanent neurological deficits

• A big challenge with new-borns is that they cannot communicate symptoms that are not readily visible making delayed or misdiagnosis in children common

• Other long term disabilities caused by a stroke occurring around the time of birth include sensory impairments, epilepsy, speech or communication disorders, visual disturbances, poor attention, behavioural problems and poor quality of life

• The burden of stroke in children is likely to be greater than in adults because children surviving stroke will have more years living with functional limitations and disability. One study found that the average cost of medical care in the first year is nearly US$43,000.

• Family and social impacts include but not limited to: altered family relationships and home life, lost income and productivity, and educational costs as the need for special service and placement.

The key issues for children and their families include:• Lack of awareness amongst the public and primary care doctors about the childhood stroke• Lack of understanding about the cause of stroke• Delayed recognition of stroke in children• Limited evidence about the best form of treatment to prevent further strokes• Lack of support service for families or parents caring for children with stroke.

American Statistics and Dr Rakesh Patel (BhB, MBChB), Dip Paeds Auck, FRACP) Paediatric Neurologist based in Starship

YOUNG STROKE THRIVERS 2016 SURVEY

• It's been a battle but I think sports and activities have been the difference in my child who suffred a stroke overcoming many obstacles

• It really is a journey of emotions and struggles as well as celebrating mile stones even more than when someone is healthy

• That children have strokes too!

• It is not common for a child to suffer a stroke so it can give a feeling of being alone in the experience. It is an on-going experience, it does get easier but there are many hurdles and challenges that will be faced in that person’s life

• This is a life time commitment- 'use it or lose it' • Will they ever be able to drive? Wil their disability affect their ability to find work? How can I best support them in their education so they can find work?

• It is important to have a strong support network for stroke children as well as their family as it affects the whole familyunit in many different ways

• What activities exist out in the community that are either specifically aimed at kids in their situation or are understanding and inclusive of them

• My stroke child, struggles to join in and makes excuses, which are actually real hindrances (in balance, lack of strength etc). How do I help them to become the best they can be without pushing too hard nor just giving in

• Swimming, skiing and horse riding, followed by dancing, drama and soccer were the most popular sports and recreational activities from the survey, that stroke children would like to participate in

Young Stroke Thrivers Foundation June 2016 New Zealand Survey

12 year old Gabriel, 9 year old Milley, 12 year old Zoe,indoor climbing wheelchair tennis alpine skiing

HOW YOUR DONATIONS CAN HELP

$50 per family towards petrol for transportation as some come from as far as Whangarei

$100 per child for ‘One on One’ Sports and Recreation lessons e.g. Snowplanet skiing lessons and hire gear through Adaptive Snow Sports NZ

$300 per child for 2day Adaptive skiing lessons and hire gear at Cardrona Alpine Resort, Snow Farm, The Remarkables, Mt Ruapehu (Whakapapa and Turoa) and Mt Hutt

$500- $1000 towards costs of rehabilitation equipment e.g. shower seats, safety rails, wheelchair ramps, walker, specialised kitchen equipment, funding towards mobility chair which cost up to $3,500

$800- $1000 towards video costs - interviews, graphics, editing. The videos will be used for talks and the website to inspire and motivate Young Stroke Thrivers

$1000 towards rehabilitation e.g. Physiotherapy (PT), Speech Language Therapy (SLT) and Occupational Therapy (OT) $3000- $4000 for respite care e.g. famly trip to Wanaka to do Adaptive skiing

$3000- $5000 GAP year providing safe living and working environment overseas and / or scholarships for University, Tertiary or Short Courses

Funding for: - Brochures / Posters design and printing

- Website Development- Marketing - Resources

- Research for more informed and effective services

DonationsYour donations are greatly appreciated - big or small. You can make a secure

donation where 100% will go towards YSTF.

http://givealittle.co.nz/org/youngstrokethrivers

YOUNG STROKE THRIVERS FOUNDATION CC50339CONTACT DETAILS

021 209 2964info@youngstrokethrivers.org.nz

youngstrokethrivers.org.nz

PO BOX 79-337 Auckland 0656 http://givealittle.co.nz/org/youngstrokethrivers

Mckenzie 2013, age 12, during Rehabilitation

“...childhood stroke in New Zealand is under-recognized, under-resourced and poorly understood.”Dr Rakesh Patel (BhB, MBChB, Dip Paeds Auck, FRACP) a

paediatric neurologist based at Auckland Starship

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