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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 ou!
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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
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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
chim
Ger
n
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.
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.
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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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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)
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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
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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.
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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.
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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
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
