www.parkinsonsonthemove.org

Our Foundation started with a main objective:

Help Parkinson’s Patients around the world. In starting this Foundation we hope to bring together my experiences personally with dealing with this disease, in the hope that others may benefits from our experiences and insights as a family and may find new ways in which to help make life a little easier for others, by sharing our knowledge and finding new ways better and more practically assist others.

Help us to help people! Make your donation! Support us!

Founded Nov/2013

Worldwide 6,3 million people have been diagnosed with Parkinson’s disease;

1,2 million in Europe.

1 in 10 persons are diagnosed before the age of 50.

facebook.com/mylifeandparkinsons - twitter: @pksonthemove

Members of The Board

Johan van GesselChairman

Virginia de OliveiraMember of the board

Martin AbrahamsSecretary

Babette van GesselMember of the board

Kees Punt Treasurer

Office:Badhuiskade 25

2586EP - The Hague

Contacts:www.parkinsonsonthemove.org

info@parkinsononthemovefoundation.org

Punt & Van de Weerdt BelastingadviseursPostbus 79

2501CB - Den Haagwww.defiscalisten.nlinfo@defiscalisten.nl

Telefoon : 070 3025825

Stichting Parkinson’s On The Move has been recognised as an Institution For General Benefit (ANBI, Algemeen

Nut Beogende Instelling) by the Dutch Tax Administration.

Table of Contents

Introduction ........................................... pg 3

Deep Brain Stimulation (DBS) ................ pg 4

Move and Keep Moving ........................ pg 5

Recognized by ANBI ............................... pg 5

2014 Achievements ............................... pg 6

Main Facebook Posts 2014 .................... pg 7

2015/2016 Projects ..................... Pg 8 and 9

Table Expenses in 2014 ........................ pg 10

Financial Planning / Forecast 2015 ...... pg 10

Financial Planning / Forecast 2016 ...... pg 11

Overeenkomst van Periodieke Gift ..... pg 12

Special Thanks to:

Michela Baars for supplyingjewelry at cost price to

our webshop foundation.

Anonymous Donors for trusting in our foundation, from the very start of ours activities.

Dear Friends of Stichting Parkinson’s On The Move,

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“I found that this Parkinson's does slow you down, whether you want to slow down or not.”

Billy Graham

2014 was a tremendous year of growth and the start up year of the Stichting. Thank you for your generous support so that we can continue to help Parkinson’s patients and those dealing with Parkinson’s around the world.

We started the foundation so we could assist people who have Parkinson’s and those who have to deal with Parkinson’s on a daily basis. Often the broader public, and some times even the clinician profession, doesn’t have a true understanding of what it is really like to live with Parkinson’s, for older but especially also younger patients. Outside of medicine and potential surgery available to a select few, it can be the smaller things together with better knowledge and understanding that can help greatly, both for the Parkinson’s patient themselves and for the family and friends around them.

As a family we have all had to learn what it is like to deal with this disease. We have all learnt many things, faced many hardships and misunderstandings, but have also come together through these experiences and

helped each other to grow in so many ways. In starting this Foundation we hope to bring together my experiences personally with dealing with this disease, but also collectively. In the hope that others may benefits from

our experiences and insights as a family, and that we may find new ways in which to help make life a little easier for others, by sharing our knowledge and finding better and more practically ways to assist others.

During 2014 we concentrated on the start up of the foundation and we are now ready to

concentrate on projects we would like to achieve for 2015 and 2016.

Once again thank you for joining Stichting Parkinson’s On The Move in changing what a diagnosis of parkinson’s means. Your support is what it takes to change the world, one patient at a time.

Yours sincerely,

Johan van GesselBoard Member

Stichting Parkinson’s on The Move

In the July of 2008 I had my DBS operation and in 2013 I had the battery replaced and I am going to write about, what it is like living with DBS.

The moment after the operation when I woke up, when I think back on the six years, that was the very best moment. I was not stiff, I had no over movement, my hands did not tremor and I felt good, I went for six months without medication only relying on the stimulator. The Dr’s said six months to recover but it was more like two years, not that the first two years were bad but it took me two years to go back to work full time, the biggest problem I have is reading and concentration and over the six years that progressively worsened.

But it all changed in 2013, the battery was running low and I guess Parkinson’s was declining and I found slowly but surely I was not able to do things anymore, like walking, I seemed to be off more than on.

Time for a battery change, I had high hopes for this, I really thought it would make a huge difference and I would be like I was in 2011. After the operation I felt the same and that was a big let down, I think my family were disappointed too, DBS had been so amazing, besides the side effects but you can’t have it all.

For four months afterwards I would be experiencing such drastic changes, one moment I was doing fine and the next I would be completely off and if I jiggled the battery then things would improve and I could feel an electric current going through my body.

The Dr’s then discover that the cable that runs from the battery to the top of my head had broken and sometime it was making contact and other times not.

Another operation and the cable was replaced - now at least I was on but still not the same as before.

In 2014 I had to stop working as things were not going well, my body was not reacting well to medication and the DBS had to be set to low voltage as the legs were not responding well to high voltage.

The problem I am experiencing with my parkinson’s is I find todo anything requires so much energy that I am continuously exhausted, my legs feel like they have 50kg weights attached to them, then reading and concentration are right down at the bottom.

It now means adjusting life to suit me better, one reminder I have is when they switch DBS off, then I see how bad it actually is without it.

Jerry van Gessel

Deep Brain Stimulation 2008-2014

(Blog Post in Nov,5 / 2014)

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It’s easer said than done, I remember when Parkinsons first started in 2005, I would go to gym, walk my dogs and it all felt so good. Then a couple of years latter, I could not manage the gym anymore, walking the dogs was still possible but slow and now in 2014, moving around is just tiring. Exercise has just dropped completely of the charts and all I am capable of doing is an hr walk with Goa in the afternoon and that I find I am totally exhausted afterwards.

This morning I found an article on EXERCISE WITH PARKINSON’S and saw how important it is to exercise, I am only fifty now and have still got a long way to go with this disease so best I find away to help myself exercise.

Moving and Keep Moving(Blog Post in Nov, 3/ 2014)

Stichting Parkinson’s On The Move has been recognised as an Institution For General Benefit (ANBI, Algemeen Nut Beogende Instelling) by the Dutch Tax Administration.

The ANBI status grants donors access to a great number of tax facilities.

Income: An ANBI does not have to pay inheritance tax or gift tax on inheritances or gifts it receives for purposes of general benefit. Tax facilities for ANBIs include corporation tax, gift and inheritance tax, and income tax.

Expenses: Payments made by an ANBI for the purpose of general benefit are exempt from gift tax. Payments made in accordance with the goals of the ANBI are exempt from tax in the Netherlands.

Donors/testators: A donor may, depending on the kind of donation that is made to the ANBI, deduct the donation from income or corporation tax (within the applicable rules, of course). depending on. Inheritance received by an ANBI is exempt form inheritance tax. Deductible donations include periodical donations. According to Dutch law these are fixed periodical payments made to an ANBI that cease at the latest upon the death of the donor.

Periodic donations are deductible from income tax if they based on an obligation laid down in a notarial “deed of donation” to make payments for a period of five years or longer at least once a year.

The conditions for successful income tax deduction (source: www.belastingdienst.nl) are as follows:

The donation has to be made to an ANBI, laid down in a notarial deed; at least for five consecutive years; has to be declared as personal allowance item in the income tax declaration

The donation has to made as fixed periodic payments ceasing at the latest upon the donor’s death, The donor receives nothing in exchange for the donation.

2014 Achievements

Around the world, over six million people suffer from Parkinson’s disease. For patients and people dealing with parkinson’s it is difficult to understand the illness. Our main objective is to help and support patients and people dealing with parkinson’s around the world.

• Support – We had people contacting us about Parkinson’s and we gave personal advice to them and referred them to Parkinson’s associations in their relevant countries or advised them to contact their Neurologist for medical advice.

• Awareness – We started a facebook page where we post new findings or helpful guides on parkinson’s. To date we have 1,867 followers.

We were invited by OMICS Group, to hold a workshop at their event, Parkinson’s disease and movement disorder conference, held in Germany in 2015.

Our biggest achievement for 2014 was setting up the foundation, Stichting Parkinson’s On The Move,

so that we could help Parkinson’s patients world wide.

• Registering the foundation with the Notary, Chamber of Commerce, tax office where we achieved ANBI status

• Social media, Facebook, Linkedin, Twittter

• Set up company gmail account

• Marketing

• Started a database where we now have 600 members

• Website - www.parkinsonsonthemove.org

• Onlineshop, where all profits go to the foundation in order to fund the projects we have in place for 2015 and 2016.

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Study links Parkinson's disease to gut bacteriaA new study finds that compared to healthy controls, people with Parkinson’s disease appear to have distinctly different gut bacteria. They have hardly any bacteria from one family and the amount present from another family seems to increase with disease severity.

Parkinson’s vaccine tested on first patientsA novel Parkinson’s vaccine will now be tested in a clinical Phase I trial in Austria by an EU-funded consortium. The vaccine was developed by the Austrian biotech company AFFiRiS AG and targets a protein called alpha-Synuclein. The protein plays a key role in the onset and progression of Parkinson’s as well as multiple system atrophy (MSA), an orphan disease. This vaccine has the potential to modify disease progression, rather than only symptomatic improvements available with current treatment strategies. The start of the Parkinson’s trial follows in the wake of positive results from a similar Parkinson’s vaccine trial recently conducted by AFFiRiS with support from the Michael J. Fox Foundation.

Mere expectation of treatment can improve brain activity in Parkinson’s patientsLearning-related brain activity in Parkinson’s patients improves as much in response to a placebo treatment as to real medication, according to a new study. “The findings highlight the power of expectations to drive changes in the brain,” said a co-author of the study. “The research highlights important links between psychology and medicine.”

Parkinson’s stem cell ‘breakthrough’Stem cells can be used to heal the damage in the brain caused by Parkinson’s disease, according to scientists in Sweden.

Providing care for a Parkinson’s patient can be a personally taxing endeavor. Learn how to cope with the stresses and gain assistance from family, friends, and local resources.People with Parkinson’s disease rely on caregivers for a wide range of support—from driving them to doctor’s appointments to helping them get dressed. As the disease progresses, dependence on a caregiver will increase substantially. Properly caring for a loved one who has Parkinson’s disease can help him or her adjust to the disease’s changing effects on the body, and knowing that a loved one is cared for properly relieves a burden of worry and can help the entire family acquiesce to the diagnosis.

But the person with Parkinson’s disease isn’t the only one who should be cared for. Caregivers must take care of themselves, too. Being a caregiver can be a complicated and physically and emotionally draining experience. Learn how to handle your role as a caregiver without neglecting your own well-being.

New technology allows users to feel what Parkinson’s patient feelsA new technology allows users to simulate symptoms that Parkinson’s patients also feel like dizziness, speech problems and tremors in his right hand.

Main Facebook Posts of 2014

LiftWare Stabilizing handle projectLiftware is a stabilising handle and a selection of attachments that include a soup spoon, everyday spoon and fork. Liftware is specially designed to improve the lives of those with essential tremor, Parkinson’s.

Unfortunately this device is not affordable for most people and establishments, we would like to make this available to hospitals and clinics dealing with Parkinson’s and this way Parkinson’s patients would benefit.In 2015 we would like to be able to donate five Liftware for a hospital in The Netherlands who deal with Parkinson’s, and in 2016 continue the project offering ten spoons for at least two institutions.

Books TranslatedWe have a series of books donated by Parkinson’s UK, explaining parkinson’s to children. Those books are aimed at children aged between 3 and 7 (who have a parent or grandparent with parkinson’s).

• My Dad has Parkinson’s • My Gran has Parkinson’s •• My Mum has Parkinson’s • My Grandad has Parkinson’s •

This series of books we would like to have translated into Dutch and made available to patients and people dealing with parkinson’s in the Netherlands.

2015 / 2016 Projects we would like to be involved in

A Conference in The Hague in 2016

2016 we would like to organize a conference and exhibition in The Hague for parkinson’s patients and those dealing with parkinson’s.

Many parkinson’s patients and caregivers are not sure what is available to them, our aim through this conference is to make them aware of whats available, medically, legally, and equipment to make life easer.

Volunteering

Help our organization meet its mission and better serve the community:- Help us reach new audiences and donors;- Help us with research and relay our findings to our members;- Help us with IT work, marketing and administration;- Help us translate our website into dutch.

Please, contact us! info@parkinsononthemovefoundation.org

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Parkinson’s WorkshopDuring the year we would like to run a serie of workshops for Parkinson’s patients and those dealing with Parkinson’s.

Dance for Parkinson’s Art Therapy for Parkinson’s

Many people with Parkinson’s experience an improvement of their symptoms when taking part in creative activity or exercise, we feel that these workshops would be of benefit to them. Often Parkinson’s patients and caregivers don’t realise there is a fun side to Parkinson’s and these workshops are aimed at showing you even though you have Parkinson’s there are still things you can enjoy.

“The secret of learning to be sick is this:

Illness doesn’t make you less of what you were.

You are still you.”Tony Snow

A revolutionary concept in treating Parkinson’s disease walking difficulties.

• Easy to use

• Improve mobility and confidence

• A few minutes daily practice can lead to improved walking, balance and freedom from freezing

It’s a training device – not something to walk

GaitAid Glasses Project

around with daily. A residual effect, increases the more you practice. The residual effect is different from person to person.

Unfortunately this device is not affordable for most people and establishments. We would like to make this available to hospitals and clinics dealing with Parkinson’s and this way Parkinson’s patients would benefit.

In 2015 we would like to be able to donate two GaitAids for a hospital in The Netherlands who deal with Parkinson’s, and in 2016 continue this project with four glasses for at least two institutions.

2015 / 2016 Projects we would like to be involved in

We were invited by OMICS Group, to hold a workshop at their event, held in Germany in august, 2015.

Our challenge is to be able to do it!

More than founds for expenses, we need to have Jerry ready for this intensive days of workshop where we would be able to

share our experience as a family, our lifes, hope and happiness in dealing with Parkinson’s.

Table Expenses in 2014

Expenses IncomeDetails Specified Total Details Specified TotalAdministrative Expenses

Incorporation costs € 1.578,05 PD Conference €36,20Bank charges € 175,58Data base € 100,00 Suppliers €36,50Shopify € 100,00

Total Administrative Expenses € 1.953,63Donations

Advertising / MarketingPostcards € 80,00 Company gifts / Donations € 1.000,00Websocial Media € 3.347,00 Private gifts / Donations € 9.563,28Database + Website € 6.056,00 Annual gift plan (5 years) € 1.200,00

Total Advertising / Marketing € 9.483,00 Total Donations € 11.763,28

Total Expenses € 11.436,63 Total Income € 11.835,98Remaning funds 2014 € 399,35

Financial Planning / Forecast 2015Expenses IncomeDetails Specified Total Details Specified TotalAdministrative Expenses

Annual administrative costs € 1.000,00 DonationsBank charges € 200,00 Company gifts / Donations € 2.000,00Unforeseen Costs € 500,00 Private gifts / Donations € 2.500,00Postage Costs € 100,00 Annual gift plan (5 years) € 5.000,00

Total Administrative Expenses € 1.800,00

Advertising / Marketing Total Donations € 9.500,00Maintanence Website € 500,00Several Marketing Costs € 500,00

Total Advertising / Marketing € 1.000,00

Support of Projects 2015GaitAid Glasses Project: Donation of Two Pair

€ 3.000,00

Workshop by OMICS Group in Germany Aug.2015

€ 1.000,00

Parkinson’s Workshops: three in 2015

€ 600,00

Liftware Stabilizing handle project: five in 2015

€ 1.875,00

Total Support of Projects 2015 € 6.475,00 Total Income € 9.500,00

Total Expenses € 9.275,00Remaning funds 2015 € 225,00

Financial Planning / Forecast 2016

Expenses IncomeDetails Specified Total Details Specified TotalAdministrative Expenses

Annual administrative costs € 1.000,00 DonationsBank charges € 200,00 Company gifts / Donations € 3.050,00Unforeseen Costs € 500,00 Private gifts / Donations € 3.000,00Postage Costs € 100,00 Annual gift plan (5 years) € 9.000,00

Total Administrative Expenses € 1.800,00

Advertising / Marketing Total Donations € 15.050,00Maintanence Website € 500,00Several Marketing Costs € 500,00

Total Advertising / Marketing € 1.000,00

Support of Projects 2015GaitAid Glasses Project: Donation of four Pair

€ 6.000,00

Conference in The Hague € 2.000,00Parkinson’s Workshops: five in 2016

€ 500,00

Liftware Stabilizing handle project: five in 2015

€ 3.750,00

Total Support of Projects 2015 € 12.250,00 Total Income € 15.050,00

Total Expenses € 15.050,00Remaning funds 2016 € 0,00

Special Thanks to:

Michela Baars for supplyingjewelry at cost price to

our webshop foundation.

Anonymous Donors for trusting in our foundation, from the very start of ours activities.

OVEREENKOMST VAN PERIODIEKE GIFT IN GELD

De ondergetekenden:1. de heer/mevrouw ............................................................, BSN ................................, woonachtig aan de ....................................................... te ...................................., hierna te noemen de schenker;2. de statutair te ’s-Gravenhage gevestigde stichting Stichting Parkinson’s On The Move, kantoorhoudende te 2586 EP, Badhuiskade 25, ingeschreven in het handelsregister van de Kamer van Koophandel, onder nummer: 59131438 en bekend bij de Belastingdienst met het RSIN: 8533.31.340, hierna te noemen de begiftigde;

in aanmerking nemende:dat de schenker aan de begiftigde een periodiek/jaarlijks gelijk bedrag voor de komende vijf jaar van € ...................... wenst te schenken, waarbij de eerste periodieke gift zal plaatsvinden/worden betaald in het jaar ….........…. en de laatste/vijfde periodieke gift zal plaatsvinden/worden betaald in het jaar ….........….;dat de schenker en de begiftigde het wenselijk achten dat de voorwaarden en bepalingen van deze overeenkomst van schenking worden vastgelegd in een onderhandse akte;dat de schenker en de begiftigde met elkaar een overeenkomst van een periodieke gift zijn aangegaan, die wordt beheerst door de volgende (aanvullende) voorwaarden en bepalingen:

Artikel 1: VOORWERP VAN OVEREENKOMST1. De schenkers en de begiftigde zijn op ................. een overeenkomst van een periodieke gift aangegaan, op grond waarvan door de schenker aan de begiftigde zal worden geschonken een jaarlijks gelijk bedrag van € ......................,-- in de vorm van geld in de jaren ….........…. tot en met ….........…. Het startjaar van de periodieke gift in geld zal ….........................…. zijn. 2. De begiftigde verklaart hierbij de bovengenoemde periodieke gift te aanvaarden en deze bijbehorende overeenkomst op te nemen in haar administratie onder het volgende transactienummer …….......................

Artikel 2: OVERIGE BEPALINGEN1. De periodieke giften als vorenbedoeld eindigen bij het overlijden van de schenker, zodat na het overlijden van de schenker geen verdere uitkering zal geschieden, ook niet naar tijdsgelang.2. Bij het overlijden van de schenker zal generlei verrekening of teruggave naar tijdsgelang van de laatst betaalde termijn of een gedeelte daarvan kunnen worden gevorderd.3. De periodieke giften zullen niet worden bezwaard, noch worden vervreemd of worden afgekocht.

Artikel 3: TOEPASSELIJK RECHT EN FORUMKEUZE1. Op deze overeenkomst is steeds het Nederlands recht van toepassing.2. Alle geschillen voortvloeiende uit of verband houdende met de uitvoering van deze over-eenkomst worden door de schenkers en de begiftigde in eerste aanleg aanhangig gemaakt bij de gerechtelijke instantie waaronder de woonplaats van de schenkers ressorteert.

Aldus in drievoud opgesteld en ondertekend te .................................. per ......................

De schenker sub 1: De begiftigde: