inSIGHTS

inSIGHTS
A quarterly newsletter from Beat Leukemia With Connor
Message from the Founders
ISSUE NO. 1
Winter 2015
Dear Friends and Supporters
While it has been 3 months since we launched Beat Leukemia With Connor, we are off to a terrific start, having raised more than
USD100,000 to fund pediatric leukemia research. A most heartfelt thank you to friends, family and supporters for your generosity and
support in our mission to find better cures for childhood leukemia.
In our quarterly newsletter, we share with you the little reported side
of childhood leukemia, including support services for sick children and
their families, as well as the latest research updates. In this inaugural
issue, we highlight a German charity which provides equine therapy to
sick children.
We continue to need your support. Please help us build awareness of
the need for more funds for childhood leukemia research and visit our
website www.beat-leukemia-with-connor.com to donate. If you have
any fund-raising ideas, or would like to organize a fundraising event,
please contact us at [email protected]
We look forward to hearing from you.
Yours Sincerely
Conwell Tam & Douglas Beal
RESEARCH FOCUS:
Insights from the American Society of Hematology
Annual Meeting, San Francisco, 7 December 2014
The American Society of
Hematology (ASH) held its
annual meeting last December. Attended by pediatric
hematology and oncology
experts from around the
world, the Acute Myeloid
Leukemia Study Group
(AML SG), chaired by Prof.
Dr. Dirk Reinhardt
(Connor’s lead oncologist)
met as a satellite at the gathering. A key focus of the
meeting was Myeloid Leukemia of Down Syndrome (ML
-DS) —the disease which
Connor suffered from.
Clinical Studies
Recent data from clinical
studies on ML-DS presented
by the Children’s Oncology
Group (COG), the Japanese
Group and the International
BFM Group showed that ML
-DS has 90% event free
survival. However, 10% of
children relapsed after initial
treatment and no relapsed
patient survived (Connor
was one of these patients).
Experts agreed that an improvement in front line
therapy is needed. In this
context, Dr. Jan-Henning
Klusmann presented preclinical data on the use of
Vorinostat for treatment of
ML-DS. Vorinostat is a drug
that targets specific genes on
a leukemic cell and inhibits
their function, thereby destroying the leukemia cell.
Connor was the first patient
with ML-DS to try this drug.
The I-BFM AML Study
Group, under the leadership
of Dr. Reinhardt, is now
considering the incorporation of Vorinostat into the
first line treatment protocol
for ML-DS.
Basic Research
Several researchers presented novel insights on the
biology of ML-DS. Notably,
researchers have identified a
network of genes on the
21st chromosome, the genes
of which are essential for
leukemic growth and regulates normal blood cell generation. The focus is now to
confirm a hypothesis that
this gene network is responsible for healthy blood cells
mutating into leukemic cells,
thereby pinning down the
exact mechanism of how
leukemia develops at the
outset.
THANK YOU!
A huge thank you to parents, staff
and friends of
Raffles Nurseries in Dubai, the
United Arab
Emirates, for
organizing a fundraising drive in
support of Beat Leukemia With
Connor.
We would also like to thank the
Boston Consulting Group
Middle East for donating proceeds from its year-end Raffle to
Beat Leukemia With Connor.
Proceeds go entirely towards
childhood leukemia research.
No administrative charges are
deducted so every cent of your
donation will contribute to finding
more effective cures for childhood leukemia.
If you would like to organize a
fundraising activity, please contact
us at [email protected]
www.beat-leukemia-with-connor.com
Research . Hope . Cure.
Healing in Partnership: Finding Comfort in Equine Therapy
Connor loved animals, especially cows and horses. We knew Connor would love to ride a real horse so several weeks before he
passed away, we brought Connor to Glücksmomente e.V. (“happy moments” in German) to take riding lessons. After each
lesson on his horse Dickie, Connor was relaxed, full of pride, joy and confidence. Avid riders ourselves, we were especially
grateful for the opportunity to ride with Connor. We want to share with you the “happy moments” Connor had at
Glücksmomente, and to highlight the wonderful work this charity does to support children and families in need.
Glücksmomente, also known as the Association for the Advancement of Horse-Assisted Therapy and Education, was founded in late
2012 as a labor of love by Andrea Meyer. Run by Andrea and her daughter Lisa as a non-profit organization, its operations are 100%
funded by donations and grants, and is dependent on external support. Children visit for free.
Glücksmomente uses the horse as a medium to promote holistic development in children. Andrea and Lisa use the unique emotional
connection that arises in the encounter between horse and child. This connection has a powerful therapeutic effect, letting the child
forget—even if only for a moment—the fear, pain or grief in day-to-day life.
“At Glücksmomente, I can be the way I feel” - Rike, 7
Through partnership with horses, Andrea and Lisa hope to give sick children, children with special needs, their siblings and children who lost siblings, the gift of time. Children that Andrea and Lisa work with are in
acutely difficult life situations—some are terminally ill, like Connor. Many
have experienced the loss of a loved one. In small groups or individually,
these children meet other children who are like them. They feel a connection and are comforted and frequently encourage each other in their healing process. With the experience with the horse at the center of every
encounter, each child is encouraged to find his or her way to approach the
horse, and to interact independently with the horse. Many children, from
the first visit, view the horse as a reliable companion and over time, develop a close, trusting bond with their partner horse.
Through a wonderful program, children develop confidence, overcoming
fear and grief in their lives, learning skills such as horse care, interaction
Connor, 3 weeks before he passed away, with his favorite horse
with the horse and vaulting. Parents also receive individual assistance in
Dickie
the form of
interviews and home visits. Andrea will put the family in touch with the
appropriate organizations that help families through challenging life circumstances.
We will never forget the wonderful moments we had riding with Connor, and are grateful to Andrea (near-left) and Lisa (far-left) for helping us create these special memories. Please help us share the story of
this worthwhile organization. To learn more about Glücksmomente,
please visit www.gluecksmomente-verein.de
Beat Leukemia With Connor is a charitable entity set up with the following main mission:

To improve cure rates for childhood leukemia by funding research that focuses on understanding the origins of
the disease using the most advanced medical technology available

To fund research on understanding and treating resistant disease, and on developing targeted treatment therapies for childhood leukemia
To learn more about Connor’s story and the work we do, please visit www.beat-leukemia-with-connor.com
Research . Hope . Cure.