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Great progress made in 2019. Important research developments, a new funding prize, promising projects and strong charity events. 2019 Dr Nouf Laqtom, an NCL Foundation-funded researcher T h a n k y o u ! E v e r y d o n a t i o n c o u n t s RESEARCH | FUNDING | TRAINING | FUNDRAISING annual report

CURRENT STATE OF RESEARCH€¦ · The “Bartiméus blindness experience” made a strong impression on everyone, putting them in the position of children who have become blind as

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Page 1: CURRENT STATE OF RESEARCH€¦ · The “Bartiméus blindness experience” made a strong impression on everyone, putting them in the position of children who have become blind as

Great progress made in 2019.Important research developments, a new funding prize,

promising projects and strong charity events.

2019

Dr Nouf Laqtom, an NCL Foundation-funded researcher

T h a n k y ou!

Eve

rydonation counts

R E S E A R C H | F U N D I N G | T R A I N I N G | F U N D R A I S I N G

annu

al r

epo

rt

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32

Greetings from our patron Jan Josef Liefers

E D I TO R I A L

These days everyone is familiar with the word ‘dementia’. Most people associate

the illness with the very elderly. Hardly anyone is aware that children can also be

aff ected by this gradual loss of memory.

I myself was one of those people who had never heard of childhood dementia.

Then I met Tim and his father, Dr Frank Husemann. I cannot even begin to imagine

how a parent must feel when they are told that there is no cure for their sick child.

My children are all healthy – something which I have learned to appreciate each and

every day since I started working with the NCL Foundation.

In the meantime NCL research has made fantastic progress. Not only has a potential

treatment been found for CLN2, one of the 13 forms of NCL; there are also many

other research projects and clinical studies which give hope to suff erers and their

families. Successes like the enzyme replacement therapy are proof that it is

worthwhile to promote research and support the NCL Foundation.

For the sake of all those who have been made to feel helpless by the illness, let us

hope that a cure will soon be found. I thank everyone who is involved in research into

childhood dementia, keeping our hope for a future without childhood dementia alive.

Yours

Jan Josef Liefers

Jan

Jose

f Li

efer

s ©

Joa

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Ger

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3

In recent years research into NCL has made ma-

jor progress on almost all forms of the disease.

The primary research focus is on gene thera-

py (GT). Two clinical studies examining gene

therapy as a potential treatment are already

underway – the CLN6 study began in 2016; the

juvenile NCL (CLN3) study at the end of 2018.

Concentrated efforts based around gene the-

rapy are also underway for CLN1, CLN2, CLN5,

CLN7 and CLN8.

Enzyme replacement therapy (ERT) for CLN2,

officially approved as a treatment in 2017, also

continues to achieve success. All of the children

treated experienced long-term stabilisation

of their symptoms and fewer epileptic fits.

Work is now being carried out to develop an

additional ERT for CLN10.

In 2019 the first individual clinical compassi-

onate trial for NCL commenced. It involves

giving individually designed medication to a

single patient suffering from an extremely rare

mutation of her CLN7 gene. This approach is

also being explored for other forms of NCL.

Although many questions still remain unanswe-

red, these are extremely important and exciting

steps on the journey to a future without child

dementia.

C U R R E N T S TAT E O F R E S E A R C H

Good news – Major progress on almost all forms of NCL!

3

OVERVIEW OF DEVELOPMENT OF THERAPY APPROACHES

CLN 1

CLN 2

CLN 3

CLN 5

CLN 6

CLN 7

CLN 8

CLN 10

PRE-CLINICAL PHASE

GT

PHASE 1/2 PHASE 3 APPROVAL

Since 2017: ERTGT

GT

ERT

GT

Since 2018: Clinical study

Individual clinical compassionate trial

Since 2016: Clinical study

Individual clinical compassionate trialGT

GT

GT

GT = Gene therapy

ERT = Enzyme replacement therapy

In the pre-clinical phase NCL models are used to test therapy approaches.

The next step is to carry out clinical studies on patients.

In Phase 1/2 tests are carried out to establish how well the

medication is tolerated.

Phase 3 provides fi nal verifi cation that the medication is eff ective.

The process ends with approval of a therapy.

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54

Participants

from 9 countries

travelled to Utrecht

for the 5th Inter-

national Meeting.

Cooperative projects and active collaboration

among researchers are crucial to developing

possible cures for childhood

dementia as quickly as pos-

sible. The “JNCL Young Inves-

tigator Symposium” creates

the basis for this, particularly

among young researchers.

The 5th International Mee-

ting was the first to be jointly

organised with the Dutch

“Beat Batten!” foundation.

A total of 11 young scientists – some of whom

are funded by the NCL Foundation – and nine

international experts came together in Ut-

recht in the Netherlands. In addition to hearing

fascinating lectures on their research area,

communal evening meals provided the parti-

cipants with an excellent opportunity to get to

know each other and exchange experiences.

The “Bartiméus blindness experience” made a

strong impression on everyone, putting them

in the position of children who have become

blind as a result of NCL.

The 5th International Meeting was, once again,

a great success and we hope that we have been

able to win talented young scientists in the long

term for our research field.

THE 2019 “JNCL YOUNG INVESTIGATOR SYMPOSIUM” IN UTRECHT.

Cooking together

in the evening.

International research projects

currently being funded

Rebecca Ahrens-Nicklas 8th NCL Research Prize

Project: Rebecca carried out animal experiments which were able to prove that changes in the neu-ronal network occur at a very early stage of the NCL condition, namely before the first symptoms occur. These malfunctions have the potential to function as parameters and measured values in clinical studies. Her findings were recently published in specialist journal ‘JCI Insight’.

Supervisor: Prof Dr Eric Marsh (The Children’s Hospital of Philadelphia).

Funding partner: Joachim Herz Stiftung.

Gemma Gómez Giró

Project: Gemma, who has successfully completed her doctoral thesis, was able to use the CRISPR/Cas method to produce human cells with CLN3 mutations which display changes relevant to the CLN3 condition. These cells are now being used by many other researchers for further studies.

Supervisor: Prof Hans Schöler (Max Planck Insti-tute Münster).

Funding partners: Batten Research Fonds, Berti Vogts, Münster Thriller Cup.

Emily Coode

Project: Heart problems are a typical accompanying disease of NCL. One of the focuses of doctoral student Emily’s research is thus the functionality of human cardiac muscle cells when CLN3 is missing.

Supervisor: Dr Katja Rietdorf (The Open University, Milton Keynes).

Funding partners: Batten Research Fonds, Bijou Brigitte Stiftung, Böttcher-Stiftung, NCL Golf Tro-phy, RT4 golf tournament, Stichting Beat Batten.

Katarzyna Więciorek

Project: Katarzyna is examining the role which the malfunction of CLN3 plays in intracellular commu-nication between mitochondria and lysosomes. Her objective is to identify new therapy approaches.

Supervisor: Dr Nuno Raimundo (University Medical Centre Göttingen).

Funding partners: dgroup, Hans Rosenthal Preis, HAORI-Stiftung Bremen, Heinz und Heide Dürr Stiftung, campaign by Julia Risel, von Poll Immobilien.

Inokentijs Josts

Project: Inokentijs is using modern protein crys-tallisation methods to decode the structure of the CLN3 protein. His objective is to use the protein’s structure to draw conclusions about what function it serves.

Supervisor: Prof Henning Tidow (University of Hamburg).

Funding partners: AstraZeneca, ContactpuntNCL, Helga- und Alfred-Buchwald-Stiftung.

Ritva Tikkanen

Project: A specific mutation in the CLN3 gene which affects only a handful of children is responsible for prematurely halting production of the CLN3 protein. Ritva (University of Giessen) carried out tests to establish whether a specific active subs-tance can be used to prevent premature halting of production in order to preserve an active protein.

Funding partners: dgroup, RT Lindau.

Elisabeth Butz, 9th NCL Research Prize

Project: The microglia, the brain’s immune cells, are already highly active at an early stage of NCL. Their role in the disease process is, however, still unclear. Elisabeth hopes to achieve a better understanding of this by using bone marrow transplants to insert healthy microglia into mice suffering from NCL.

Supervisor: Prof Susan Cotman (Massachusetts General Hospital).

Funding partners: Joachim Herz Stiftung.

Einar Krogsæter

Project: Ion channels play an important role in the function of lysosomes, the ‘recycling centres’ for cells. There are indications that lysosomal calcium channels do not function as well as they should in numerous storage disorders. Einar’s project aims to find evidence to support this working hypothesis for NCL and to use it to develop active substances.

Supervisors: Prof Christian Grimm and Prof Dominik Paquet (LMU Munich and University Hospital).

Funding partners: IQVIA Commercial, Lieselot-te-Paulsen-Stiftung, Werner Reichenberger Stiftung.

Daniela Borchert

Project: NCL impairs eye and brain cells in parti-cular. Daniela is developing cell models using eye and brain cells with the NCL defect to gain a better understanding of the disease processes. In addition to this, she is using the models to further characterize already existing active substances and to establish new active substance screening processes.

Supervisor: Guido Hermey (University of Hamburg).

Funding partners: Heinrich Hartmann Stiftung, Münster Thriller Cup.

R E S E A R C H & F U N D I N G 2 0 1 9

Youth is our hope – Supporting young researchers and creating a network.

© L

iann

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amhu

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76

R E S E A R C H & F U N D I N G 2 0 1 9

A key breakthrough in fundamental research.

The preliminary results of the research project being carried out by Dr Nouf

Laqtom and her supervisor, Dr Monther Abu-Remaileh, at Stanford University pro-

vide hope that a key breakthrough has been achieved. The scientists’ work could

play a crucial role in answering questions which are at the heart of NCL research.

Dr Nouf Laqtom

uses the LC/MS

device to identify

the lysosomes’

metabolic products

in more detail.

1. What is your background? And when did

you hear about NCL for the first time?

I earned my PhD in Genetics at The University of

Edinburgh, UK. The inherited metabolic disorders

such as the severe childhood lysosomal storage

diseases (LSDs) are commonly encountered

Dr Nouf Laqtom answers three questions:

in Saudi Arabia (my home country) and other

Gulf states due to consanguineous marriage.

2. Do the special circumstances, fighting

a fatal disease, affect your attitude to

your work?

In 2016, I joined the lab of Prof. David Sabatini

as a visiting postdoctoral researcher. There,

I met a senior postdoctoral fellow, Dr. Monther

Abu-Remaileh, who was developing a method

to isolate high quantities of pure and intact

lysosomes from cells and animal tissues.

The initial results from his purification method

were so far encouraging, providing a better

tool to investigate lysosomes in health and

diseases. I was so excited to work with him on

CLN3-related neuronal ceroid lipofuscinosis

(NCL), which is a class of LSDs.

CLN3 disease has a devastating impact on

children’s lives and their health is a major

motivation for us.

3. What impact would you like your pro-

ject to have?

Our current efforts are largely geared towards

determining the unknown biochemical function

of CLN3. We hope that our work will help to

cure Batten disease and slow its progression

as well as to contribute to developing novel

assays to determine disease severity.

Dr Monther Abu-Remaileh of

Stanford University.

Dr Nouf Laqtom of Stanford University.

Nouf and Monther (funding partners: Bijou

Brigitte Stiftung and Stichting Beat Batten)

were able to use a newly developed, innova-

tive procedure to identify metabolic products

which are concentrated solely in cells with

an NCL defect. They have thus discovered a

characteristic which is typical for the disease

and highly significant as regards three things:

1. Function: Research is being carried out

to investigate whether the CLN3 protein,

which is defective in juvenile NCL sufferers,

is a transporter for these specific metabolic

products. Should this be confirmed, then an

unambiguous, previously unclarified function

of the protein would have been established.

2. Biomarkers: The newly identified meta-

bolic products, which are characteristic for

NCL, could result in new applications in the

field of biomarker development to verify the

efficacy of a medication. These biomarkers

are particularly important for clinical studies

and have, to date, not been available for NCL.

3. Therapy approach: The great hope is that

these findings will result in new approaches for

potential active substances and thus possible

therapies for children with NCL.

color merge.pdf511 x 378

Verifi cation of co-localisation (yellow) of the CLN3 protein (green) with a lysosomal protein (red).

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98

N C L C H I L D H O O D D E M E N T I A

Isabella is nine years old and was once a completely healthy child. Horse riding and playing with friends were both normal parts of her life. Everything has changed since she has been suff ering from NCL childhood dementia.

Living with NCL childhood dementia:

“When life deals your child a terrible hand!”

At night she has vomiting attacks. A brisk 500-me-

tre walk exhausts her, even though she uses a

rolling walker, and she often has trouble fi nding

words. The gradual loss of independence often

makes Isabella very angry. When that happens

the only thing her family can do for her is to hold

her in their arms.

Since most people have never heard of NCL, Isa-

bella’s parents have had cards printed and always

carry some with them. The cards say “My name

is Isabella and I have NCL CLN3. As a result of my

illness I have become blind and am now forget-

ting things I have learned, like speaking and how

numbers work. My motor skills are deteriorating

continuously and I have epileptic fi ts.”

Isabella’s family works hard every day to make

her life as pleasant and normal as possible.

They do crafting;

go on day trips and

read bedtime sto-

ries. “We don’t yet

know how quickly

the deterioration

of Isabella’s abilities

will progress,” says

her mother Sabine.

“What we do know

is that every skill

she loses will never come back. The fight

against NCL is a race which it seems impossible

to win. But we are trying anyway.”

A feeling of security in diffi cult times – Isabella in her mother’s arms.

R E S E A R C H & F U N D I N G 2 0 1 9

Outstanding science – The “Neurodegeneration Research Award”, presented by the NCL Foundation and the ‘Joachim Herz Stiftung’ foundation.

€ 100 000 for research into NCL and Alzheimer’s.

In 2019 we presented the first “Neurodege-

neration Research Award” – in partnership

with the Joachim Herz Stiftung.

The prize, endowed with

€ 100 000, went to re-

searchers Dr Sabina Ta-

hirovic (DZNE, Munich)

and Prof Susan Cotman

(Massachusetts General

Hospital, Boston) for their

work on the similarities

and differences between Alzheimer’s and

NCL juvenile dementia.

In both conditions activity of the so-called

microglia – the brain’s immune cells – is in-

creased. The goal is to achieve a better un-

derstanding of the role which these cells play.

The two scientists’ prize-winning cooperative

project is particularly important in view of

the gene therapy studies which are currently

being carried out. These therapies only treat

nerves and not the microglia cells. One of

the project’s focuses is on establishing what

consequences this has and what active subs-

tances could be required as supplements to

gene therapy.

From left to right: Dr Frank Stehr,

Prof Susan Cotman, Dr Sabina Tahirovic

and Dr Henneke Lütgerath, Chairman

of the Board of the ‘Joachim Herz

Stiftung’ foundation.

“We want to use this work as the basis for identifying new approaches for child dementia treatments, which could also be studied in connection with therapies

for Alzheimer’s.” (Dr Sabina Tahirovic)

© B

lindt

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© In

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Progression of child-hood dementia NCL.

loss of sight

mental deterioration

character change

verbal deterioration

epilepsy

heart problems

nursing care required

death

years of life

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T R A I N I N G 2 0 1 9

In 2019 our strong partners again included

service organisations such as the Rotary, the

Lions, the Round Table and the Ladies’ Circ-

le, who supported us with donations and/or

events – such as the Old Table 215’s duck race;

the Round Table 169’s Big Hamburg Spring

Get-Together and the Round Table 70’s ball.

THE “ROLLING DINNER”

The idea behind “Rolling Dinners” is to help a

good cause with a delicious dinner. The host

cooks for friends or colleagues, asking them to

make a small donation to the NCL Foundation

instead of bringing a gift. To ensure that this

becomes a tradition, an NCL wooden spoon

is used as a ‘relay baton’. We wish all the par-

ticipants ‘Bon Appétit’!

Kulani suffered his first epileptic fits at the

age of two. It was only two years and four

hospitals later that he received the correct

diagnosis of NCL, more specifically CLN2, and

was able to begin the corresponding enzyme

replacement therapy. Crucial time was lost –

it is already known that the earlier treatment

begins, the more effective it is. Stories like this

one show how vital it is to raise awareness of

NCL and why the NCL Foundation is working

to promote this awareness among physicians,

schoolchildren and the general public.

INFORMING PHYSICIANS

One of our most successful measures is the

placement of lectures at hospitals and congres-

ses – for example again at this year’s Congress

for Paediatric and Adolescent Medicine in

Munich. In addition to this, the certified NCL

online training course on the MedLearning

platform was updated and prolonged for a

further two years. Over 5 300 physicians took

advantage of the last training course.

EDUCATING SCHOOLCHILDREN

Our “NCL macht Schule” school project, within

the scope of which we raise the young gene-

ration’s awareness of rare diseases, has also

made excellent progress. In addition to schools

in Hamburg in 2019 we were also able to visit

schools in Nuremberg, Würzburg and Wupper-

tal. This was made possible by the generous

support of the “Stiftung Kinderförderung von

PLAYMOBIL” charity and a cooperation with

Essential knowledge – our work to raise awareness of NCL.

Baylab, the students’ laboratory run by Bayer

AG. Two project weeks were held, giving us

the opportunity to educate ten school clas-

ses about NCL. The pupils were then able to

directly apply their newly gained knowledge

in the lab.

SPREADING KNOWLEDGE

To inform the general public about NCL, Wall

GmbH in Düsseldorf provided us with 500 free

advertising spaces for City Light Posters under

the patronage of Alderman for Health Prof Dr

Andreas Meyer-Falcke. The posters were designed

by the Kreativkonfekt agency and printed by im-

press media, both free of charge. An important

step towards making NCL more widely known.

Biology students at

Corveystrasse Gram-

mar School collected

a total of € 428.90 for

the NCL Foundation.

Top photo: A total

of 662 pupils were

educated about NCL

in 2019.

Photo left centre:

The NCL wooden

spoon for the

“Rolling Dinner”.

An annual tradition

– the Old Table 215

Dortmund’s duck race.

An important education campaign in Düsseldorf.

From left to right: Wolfgang Rolshoven (head of the

Düsseldorfer Jonges e.V. association), Dr Frank Stehr

(NCL Foundation Board), Prof. Dr Andreas Meyer-

Falcke (Alderman for Health), Frauke Bank (Press

Offi cer, Wall GmbH)

+++ 2019 FACTS AND FIGURES +++

19lectures

355physicians informed

3new

research projects

14labs and

congresses visited

662pupils

educated

© A

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nder

Tem

pel

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mbH

90publications

T h a n k y ou!

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F U N D R A I S I N G 2 0 1 9

Board of Trustees member Hubert Neuba-

cher celebrated the centenary of his company,

Barkassen-Meyer, by holding numerous events

in aid of our foundation to mark this milestone.

The Hard Rock Café also designed a limited

edition centenary pin and donated 10% of the

proceeds it raised to NCL research.

APRIL Many of us dream of playing a round of

golf with a professional golfer. This can become

a reality at the PGA’s ProAm tournaments. This

year we were the association’s charity partner.

MAY In addition to a cheque for € 10 000 real

estate company von Poll Immobilien GmbH also

collected donations for us at its annual summer

party and golf tournament. This generous sum

is being used to co-fi nance Nuno Raimundo’s

research project.

A festival for young

and old – the “NCL

Charity For Family”

event at the Golf

Lounge Hamburg.

Bottom: Wonderful

weather at the

14th NCL Golf-Trophy

at the Castanea

Resort Adendorf.

Von Poll Immobilien made another

donation for NCL research.

Isabella and her family welcome Jan Hähnlein

and his companions to Berlin.

We, as a group, can give children hit by childhood dementia the hope that there can be a future without it. This is why we are so pleased about the many events and fundraising activities which were organised in 2019 to collect money and raise awareness.

The highlights of our 2019 charity events.

JANUARY Under the motto “The JOYCES sing

with children for children” the quartet organised

a second joint fund-raising concert with children

from SportNest and Korntal-Münchingen Music

School, which was a great success.

FEBRUARY 37 fantastic pieces of art went

under the hammer at our “Life Artists” chari-

ty art auction, selling for a total of € 33 200.

The patron of the event was Senator Cornelia

Prüfer-Storcks while artists included Udo Lin-

denberg, Anke Harnack, Armin Müller-Stahl

and Kurt Will. The auction, presided over by

auctioneer Eva-Maria Uebach-Kendzia and

hosted by Birgit Saatrübe-Möllers, was again

held at JENSENs Lagerhaus.

MARCH Tombolas and auctions would not be

possible without the many, many sponsors who

donate items. Holiday resort ROBINSON Club Schla-

nitzen Alm is one of these sponsors, generously

supporting us every year with holiday vouchers.

Top:

37 pieces of art

went under the

hammer at this

year’s art auction.

Bottom:

Band ‘Orange Blue’

played at the

centenary celebra-

tions “100 years of

Barkassen-Meyer”.

Jan Hähnlein and his companions organised

not one but three sports events – the Masser-

berg March (100 km in 24 hours); the 20-Day

Charity Tour (2 600 km by bike along the Way

of St James) and the “Foldie World Record”

(cycling on a folding bike from Erfurt to Berlin in

24 hours). We bow down before such commit-

ment and gladly accept the € 12 000 raised.

Visitors to the “NCL Charity For Family” event

at the Golf Lounge Hamburg ate, play-

ed and chatted – all for a good cause!

In addition to crazy golf and a putting

competition one lucky family was able

to win an AIDA cruise.

JUNE A 2-week tour around the Baltic

in a normal car? Far too boring for ad-

venturers Heiko Riemke and Jens-Peter Zeyn.

They built their own multi-purpose Unimog

truck for the “Baltic Sea Circle” rally, collecting

€ 12 480 in the process!

The 14th NCL Golf Trophy again took place at

the Castanea Resort in Adendorf under the

patronage of Lower Saxony’s Minister of the

Interior, Boris Pistorius, and Adendorf’s mayor,

Thomas Maack. In addition to the traditional

tombola, actors Anjorka Strechel and Gerry

Hungbauer also auctioned off a small role in

their soap opera ‘Rote Rosen’.

The 7th Münster Thriller Cup raised a record-bre-

aking sum of € 100 000! Numerous VIPs such as

Anna Loos, Wolfgang Kubicki, Sven Ottke and

Uli Stein, took up the invitation of Jan Josef

Liefers, presenter Werner Schulze-Erdel and

Vereinigte Volksbank Münster.

© J

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7th Münster Thriller Cup

Gave their all to achieve a record-breaking fi gure of € 100 000 – Werner Schulze-Erdel and our singing patron, Jan Josef Liefers.

© J

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F U N D R A I S I N G 2 0 1 9

The Mövenpick Hotel once again hosted the

gala evening, which was followed by a relaxed

round of golf at Aldruper Heide Golf Club the

next day.

JULY Bad Salzufl en Handball Club organised a

very special fundraising campaign – fans were

asked to donate a sum of their choice for every

goal scored by the men’s fi rst team. Thank you

for the donation of € 5 438.

Martin Hengesbach walked and

walked and walked – in all 660

km from Oslo to Trondheim, in

just 14 days. The purpose of the

hike was to raise money for NCL

research.

AUGUST Coff ee company Wacker’s

Kaff ee organised a fundraising event at their

main store in Frankfurt, donating the entire

takings for the day to us.

And another golf tournament took place! The

Universal Music Golf Tournament, organised

by Rouven and Guido, raised € 1 000 for the

NCL Foundation.

SEPTEMBER No September would be complete

without our vintage car festival! It took place

for the 12th time at Randel Park in Hamburg,

together with the Old Table 300, Carlo von

Tiedemann, wonderful vintage cars and many

visitors.

Art, literature and charity – a unique combinati-

on which was the focus of the event organised

by gallery owner Cetin Yaman and artist Rita

Basios-Schlünz on the MS Commodore. The

Foundation was represented by our unsalaried

ambassador Thomas Bodenburg.

OCTOBER Mount your horses, set, go – the

motto of the charity rally held by RFV Schneeren

to raise money for the NCL Foundation.

Benjamin Pichelmann donated € 50 for every

picture sold at his exhibition “1000Miglia by

Benjamin Pichelmann” to us.

NOVEMBER Together with Masonic lodges

‘Eintract an der Elbe’ and ‘Zur Hanseatentreue’

the Hamburg Doctors’ Orchestra held a fund-

raising concert in the Mozartsäle rooms to raise

money for the NCL Foundation.

A glass of wine for a good cause – Janine Rei-

chert organised the 2nd Charity Wine Tasting

Event, including her special NCL charity wine.

The NCL Foundation team.

HONORARY FOUNDATION COUNCIL (from the left): Al-exander Rößler (Legal) ǀ Martin Hartleif (Finance) ǀ Dr Frank Husemann (Chairman) ǀ Dr Rainer Kuhn (Research)

FOUNDATION OFFICE (from the left): Dr Frank Stehr

(Managing Director) ǀ Michelle Bonke (Project Coordination)

ǀ Dr Herman v.d. Putten (Research) ǀ Tiziana Serio (Training,

Fundraising)

HONORARY SCIENTIFIC ADVISORY BOARD (from the left): Prof Dirk Isbrandt ǀ Prof Beverly Davidson ǀ Prof Robert Steinfeld ǀ Dr Angela Schulz ǀ Prof Rudolf Martini

HONORARY BOARD OF TRUSTEES (from the left): Ralf Sigrist ǀ Sigrid Bauschert ǀ Hubert Neubacher ǀ Birgit Saatrübe-Möllers ǀ Olaf Rotax ǀ Dr Christian Borchard

F O U N DAT I O N

The NCL Foundation has held the DZI donation seal of approval since 2006. It is the seal of approval for legiti-mate charitable organi-sations, confirming that they handle the money entrusted to them care-fully and responsibly.

Seal organisations volun-tarily undertake to meet DZI standards, thus ful-filling the highest quality requirements.

The balance sheet and allocation of donations for 2018 are presented in brief. The majority of donations were invested in research. Spon-soring services, unsalaried assistance and indirect research funding are not shown. For data protection regulation-related reasons the overall annual remunerations for permanently employed staff have not been disclosed. For more information visit our homepage www.ncl-stiftung.de/wer-wir-sind/vertrauen/.

+++ DONATION SEAL OF APPROVAL +++

Deutsches Zentralinstitut für soziale Fragen (DZI)

Certifi ed + recommended

German Central Institute for Social Issues (DZI)

Wacker's Kaff ee

served hot drinks to

raise money for us.

In the saddle – RFV Schneeren’s charity rally.

What a hike – 660 km in 14 days

for a good cause.

2018 BALANCE SHEET

ASSETS Capital assets 862,3 Working capital 869,8

Accruals and deferrals 3,1

1735,2

ASSETS

LIABILITIES Capital 50,0 Contingencies 1.170,3

Reserves 47,6

Liabilities 467,3

1735,20 500 1000 1500 2000in ‘000 euros

LIABILITIES

ALLOCATION OF DONATIONS 2018:

in ‘000 euros

RESEARCH FUNDING 571,4

TRAINING 68,4

FUNDRAISING 93,8

EVENTS 54,2

ADMINISTRATION 41,7

TRAVEL EXPENSES 20,2

for the donation of € 5 438.

Martin Hengesbach walked and

walked and walked – in all 660

hike was to raise money for NCL

research.

AUGUST

T h a n k y ou!

Eve

rydonation counts

Page 9: CURRENT STATE OF RESEARCH€¦ · The “Bartiméus blindness experience” made a strong impression on everyone, putting them in the position of children who have become blind as

Thank you!

CONTACT

NCL-StiftungHolstenwall 10 • D-20355 HamburgTel.: +49 (0) 40 69 666 74-0Fax: +49 (0) 40 69 666 74-69E-Mail: [email protected]

www.ncl-stiftung.dewww.ncl-foundation.com

ACCOUNT FOR DONATIONS

NCL-StiftungIBAN: DE50 2005 0550 1059 2230 30BIC: HASPDEHHXXXHamburger Sparkasse

Please state your name and address in the purpose fi eld of the bank transfer form.

We would like to thank all the long-time and new supporters who make our work possible! The following are just a few of them:

A.Behrens & G.Felsch | AWG Druck | Alarmzentrale Hamburg | Alsterarkaden Apotheke | Alzheimer Gesellschaft Hamburg | Andreas Überschär

Fotografie | Armin Sandig | Art 28 | Auto Wichert | Bäckerei Bergmann | Barbara Münstermann | Bartels Druck | Benjamin Pichelmann | BENUVA

Stiftung | Bernd Husemann | BILD hilft e.V. „Ein Herz für Kinder“ | BOB Niemann | Buchbinder | Budnianer Hilfe | Bunny GmbH | Caffè Chicco D'Oro |

Charity Conception | Christa Hartmann | Christian Brinkmann | Christiane Gust | Clifford Chance | Comedia. IT | Constance Renken | Crowe | Daniel

Fortmann | Deutsche Telekom | DHL Express Germany | DIE PRINTUR | Dmitrij Leltschuk | DMV Hamburg | Dr. Martin Wilhelmi | druckriegel |

Edeka Struve | Eichhorn Solutions | Ekatarina Solovieva | ELBE Foto Thomas Willkowei | Erhard Heinen | FC Bayern Hilfe | Feuerbestattungen

Celle | Feuerbestattungen Stade | Fiete Deichgraph | flyer-druck.de | Freunde der Kunsthalle | FRIENDS CUP e.V. | Friends of Britain | Galerie Anne

Moerchen | Generationen Verlag | GM Willeke | GRK Golf Masters | Günter Sell | Gustav Jerwitz | Gymnasium Süderelbe | H.J. Gottschalk | Hamburg

Airport | Hamburg Marriott Hotel | Hamburg1 | Hand in Hand für Norddeutschland | HanseRent | Harry Schulz | HASPA | Heikotel | Heinke Böhnert |

Heitmann Haustechnik | HIP Homann Import & Produktions | Hogan Lovells | Int. School of Hamburg | IWC Tecklenburger Land | Jan Götting | Jens

Lorenzen | Jens Rausch | Jimdo | Jo Röttger | Julia Kickmunter | Jürgen Joost | Jürgen Schwab | Kappich & Piehl | Kickertischverleih Brose | Kirsten

Nijhof | Klaus Frahm | kreativkonfekt | Krematorium Bielefeld | Kriegsblindenstiftung Berlin-Brandenburg | Kunsthaus Lübeck | Kurt Viercke | LC

10 | LC 17 | Leo Club Askanier | Lindemann Bilderrahmen | Lindner Hotel Am Michel | Lions Club Norderstedt Neo | LIONS Ludwigslust | LIONS

Schaumburg | Lufthansa | Luther Rechtsanwälte | Madison Hotel | Malo, der Drachenbär | Martin Sommer | Matthias Niehoff | Max Siemen |

Messebau Feith | Michael Penner | Mitsue Kono | multicolor | Multiple Box Hamburg | Nicole Leidenfrost | NORDGLAS | NW Zentrum | Peter Jensen

GmbH | PETER JENSEN Stiftung | Peter Lübeke | Peter Merck | Peter Suhren | Peter Thomann | Peters Bilderrahmen | Philipp Jaeckel | Phoenix

Reisen | Platinum Oliver Rolf | PW AG | Ralf Zacherl | Ramon Waver | Rapidmail | Rarities for Charity | Rautenherz | Reinhard Frank-Stiftung |

Richard Fuchs | Rita Starck | Ritzenhoff | ROBINSON Club | Romy Stangl | Rotaract Lüneburg | RC Frankfurt/Main Int. | RC Hamburg-Altona |

RC Wiesbaden Nassau | RC München-West | Round Table Deutschland | RT 1 | RT 112 | RT 115 | S&D Siebdruck | Scheck Stiftung | Scorpions |

SmartChecker | Sommer & Partner Immobilien | Sparda-Bank Hamburg | Springer Bio-Backwerk | StartUP Praxis | Steve Strickland |

Tangent Club 56 | Telefónica | TEREG | The EAGLES Charity Golf Club | Thomas Claussen | Thomas Meyer | Thorsten Schröder | Tom

Thomsen | Town & Country Stiftung | Ulrich Puchstein | United Charity | Verein zur Unterstützung benachteiligter Kinder | V-Bank |

VinChoc -ENJOY THE SENSES | Vladi Private Islands | Walentowski Galerien | Wempe | Werner Pawlok | WORLD of DINNER | Zodwa Selele

The NCL Foundation is a member of the Association of German Founda-tions and of Achse e.V. and works closely with other NCL institutions – such as the NCL Group Germany.

Many thanks to advertising agency tilly & unger and printing company ac europrint for designing and printing our 2019 annual report for free!

We would like to thank everyone

who asked for donations to the

NCL instead of birthday presents as

well as the bereaved families who

thought of us even in their darkest

hour, asking for donations instead

of flowers.

A.Behrens & G.Felsch | AWG Druck | Alarmzentrale Hamburg | Alsterarkaden Apotheke | Alzheimer Gesellschaft Hamburg | Andreas Überschär

T h a n k y ou!

Eve

rydonation counts