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ALGSA
Volume 22, Issues 1 & 2
Jan — Jun 2015
T
4 Life
™
Alagille Syndrome Alliance Newsletter
Report From Your Board of Directors
he theme for our 2016
Symposium is “Riding the
Waves of ALGS.” While we each
have our own individual wave to
navigate, as your board of directors,
we have an obligation to watch all the
waves to help guide the organization.
Over the last few years, the role
of patient advocacy organizations,
like the ALGSA, has become
more prominent in the areas of
research and in the development of
treatment options. Many of these
organizations have found that they
can have a significant impact when
they are actively advocating on
behalf of their patient communities.
Their importance is twofold. There
are over 7,000 rare diseases. Patient
groups need to first educate and
bring awareness to researchers
and bio-pharma companies about
their specific disease and how it
may intersect with the company’s
interests. Then, once mutual interest
is established, patient advocate
groups need to facilitate connections
with families that want to participate
in research.
Inside
Founder’s Notes................................. 2
Alaina K.Hahn Scholarship... 3
OT D
N
ALGSA Statement E
T
A
Remarkably
RARE
D
P
U
ALGSmile File
T
E
Star: Malee Y
Ann
Join ALGSA CONNECT............... 3
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4
.. ..........................
4
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4
................................
5
Family Spotlight: Schiozzi . . .. 6
Congrats Shambhavi .. ................. 8
???? . . ................................................................ 8
The ALGS community is finding
these opportunities.
Starting
with the interest in ALGS from
Lumena/Shire, we continue to see
an increased interest in research
from physicians, scientists, and biopharma companies. However, we
need an increased capacity to engage
and partner with these opportunities.
While our mission remains the
same, and our first goal continues to
be support for our community, we
need to be in a position to ride the
waves as far as they will take us. The
hope is that these currents will lead
to better treatment options, better
understanding, and better quality of
life for those with ALGS and their
families.
With this in mind, we examined our
strategic goals at our annual Board
meeting in February and aligned
them to meet our community’s needs
in this new landscape.
1.Support the ALGS community.
The ALGSA will continue to support
the ALGS community through
innovative efforts that emphasize
education,
opportunities
to
connect, access to resources, and
individual support.
2.
Develop capacity to strengthen
patient advocacy and research.
By increasing engagement in the
advocacy and research arena,
the ALGSA will help support
development of therapies that
benefit ALGS patients.
3.Engage the medical community
to broaden knowledge and inform
the ALGS community.
The
ALGSA
will
work
with
the Medical Advisory Board
to develop a standard of care,
communicate with practitioners,
and engage medical students in
ALGS education.
4.
Develop
a
self-sustaining
symposium that is responsive to the
needs of the ALGS community.
The ALGSA will offer a more
frequent symposium (every two
years rather than every three) and
will offer more opportunities for
families to access resources that
meet their immediate needs.
5.
Achieve
fiscal
sustainability
through fundraising.
By leveraging staff resources and
external relationships, the ALGSA
will continue to be financially
sustainable. Increased financial
resources will allow the ALGSA to
grow and increase overall impact.
6.
Achieve
an
administrative
framework that supports growth
of the organization.
The ALGSA will align staff
resources to the strategic goals,
develop an operational model that
allows for growth, and continue the
current trajectory that encourages
growth, flexibility, and responsiveness
to stakeholders.
These are very lofty goals. But we
feel strongly that with our Associate
Executive Director, Wendy Sparks,
and our entire community’s support,
we can meet and hopefully exceed
these goals.
We also needed to change the board
structure to support these new goals.
Cindy Hahn’s extensive knowledge
of ALGS and her relationships
continued on
Page 3...
Founder’s Notes
on this difficult road we face, and
living my life as she always lived
her own – with vibrant life, heartfelt
laughter, and enduring love, fearlessly.
H
appy spring everyone! It’s hard
to believe a quarter of the year
is gone and we are well on the way
to summer. So much has happened
in the first months of 2015 that I am
struggling to know where to start
with these notes.
This year marks 22 years that I have
been at the helm of the ALGSA, a
role I continue to thoroughly enjoy
and that nourishes my soul beyond
measure. I started this organization
for my family, so that we might know
others sharing the same life journey
as ourselves, and for my daughter,
Alaina, so that she would not be
alone in her daily challenges of living
with ALGS. Since Alaina’s death
from complications of this terrible
disease on January 15, 2015, I have
struggled to find continued purpose
and meaning in my life. Alaina was
an anchor, part of my emotional and
social compass, a bright light in my
life, and it is difficult to face a future
without her by my side. She helped
so many people in her varied social
circles, not the least of which our own
ALGS community, and her absence
is felt not only by my family, but by
family, friends and acquaintances far
and wide. I marvel and am humbled
by her accomplishments and hope
that I am able to honor her legacy as
she would have wanted me to with
continued service to our organization
and community, nurturing our family
Part of moving forward is the
new direction I have taken at the
ALGSA. As you likely noticed, the
title of this column has changed
from “President’s Page” to “Founder’s
Notes”. This reflects the changing
role for Anna Chow and me in our
organization. As Anna explains in her
Report from the Board of Directors in
this issue, she assumed the position of
President of the Board at our annual
Directors meeting in February. I am
immensely pleased that Anna has
taken on this new challenge and am
fully confident that she will manage
the ALGSA prudently, efficiently,
and with style. This change in
organizational management allowed
me to move into a role that is my
passion – research and advocacy. I am
relishing this opportunity and can
imagine no other endeavor
into which I want to pour
my energy and purpose.
You should expect to hear a
lot more from me in coming
months about our efforts
and new initiatives in these
exciting and dynamic areas.
I am pleased to announce
that the ALGSA has established a
scholarship in Alaina’s memory – the
Alaina Kaitlyn Hahn Celebratory
Scholarship. All donations received
in Alaina’s name will be directed
to the scholarship fund which we
hope will become self-sustaining.
Alaina’s Scholarship will be awarded
to graduating high school students
who have ALGS and are planning
to pursue higher education in the
health sciences. Biology, anatomy
and physiology, orthotics and
prosthetics, these were my daughter’s
passions and I can think of no more
fitting way to honor her memory
and her life than by helping young
adults with ALGS pursue a career
in this area of study. I am positive
that Alaina is watching all these
exciting developments unfold for our
organization with a huge smile on
her face!
In closing I want to share a recent
experience that was both heartwrenching and heart-warming and
that has helped me heal. I have been
participating in a painting workshop
called the Women’s Healing and
Creativity Circle and completed three
paintings titled Illuminated Heart,
Legendary Self, and Awakening My
Inner Healer. It is the last that has
proven to be the most enlightening
and profound. My Inner Healer
was difficult to paint. I sketched her
time and again until she felt right, I
included symbols that came
from unknown origin, I
simply went with my gut
and it felt right. At the
conclusion of the workshop
I absolutely loved My Inner
Healer without knowing
why. It wasn’t until the next
morning when I looked at
her that I realized I had
painted my precious Alaina. She now
hangs on the wall in my office where
I can gaze at her often, every day,
and talk to her when I feel the need.
This was not intentional, not planned
in any way, it just happened, but it
makes utter and complete sense. My
daughter may not be here physically,
but her energy is always present, her
spirit continues to fill the room, and
continued on
Page 3...
Links4Life™ is published four times per year for members of the Alagille Syndrome Alliance, a national support network for people with
Alagille Syndrome (ALGS), a rare genetic disorder. The primary purpose of Links4Life™ is to provide general information. Links4Life™ does
not provide medical advice, nor does it promote, endorse, or recommend any product, therapy, or institution. Its contents should not be used for
diagnosing or treating health disorders. Readers are advised to seek advice from licensed heath professionals regarding ALGS or other disorders.
Statements and opinions expressed in articles are not necessarily those of the Alliance.
2
Contributions to Links4Life™ should be sent to: Cindy Luxhoj Hahn, President, Alagille Syndrome Alliance, 10500 SW Starr Drive, Tualatin,
Oregon 97062. (503) 885-0455. No faxes please. Copyright © 2015 Alagille Syndrome Alliance. All rights reserved.
Links4Life™ Newsletter • Jan — Jun 2015 • Volume 22, Issues 1 & 2
continued from the
Cover “Report From the Board”
with physicians, researchers, and
government agencies make her
uniquely positioned to advocate for
ALGS research. In order for her to
focus on this important goal, I, Anna
Chow, have assumed the role of
President of the Board of Directors,
overseeing the operational aspects of
the ALGSA. Cindy will continue to
lead the vision of the organization as
the Founder/CEO.
Joe Anderson is our new VicePresident. He will continue to
facilitate webinars and find new
ways of connecting families across
great distances. Patti Everett will be
continuing on as our Treasurer, and
Wanda Sheppard as our Secretary.
Roberta Smith is our new
Communications Chair focusing on
support for families and editing our
quarterly newsletter.
Erik Luxhoj continues to be our
technology expert overseeing our
website, and Bill Glenn will continue
as our education specialist, informing
us on best practices in education.
It is my honor and privilege to
be such an integral part of the
ALGSA Board. My focus will be
on facilitating the many discussions
that lie ahead to find solutions to the
challenges our community faces on a
daily basis.
On behalf of the ALGSA Board of
Directors,
- Anna Chow,
President
ALGSA
CONNECT
Patient Registry
R
emember to register at https://
connect.patientcrossroads.
org/?org=algsa. It only takes about
15 minutes of your time. Knowledge
is power, and the more we know
about ALGS, the more powerful the
results will be.
Alagille Syndrome Alliance Announces Establishment of the
Alaina Kaitlyn Hahn Celebratory Scholarship
T
he ALGSA is pleased to
announce the establishment of
the Alaina Kaitlyn Hahn Celebratory
Scholarship.
The
scholarship
celebrates the legacy and impact of
Alaina Kaitlyn Hahn, who passed
away on January 15, 2015, due to
complications from ALGS. Alaina
is the daughter of ALGSA Founder
and CEO Cindy Luxhoj Hahn and
is remembered for her inspiring
contributions to Alagille awareness
through her art and jewelry as well
as unending leadership within the
Alagille community.
“There was an amazing outpouring
of support from Alaina’s friends
and family along with the Alagille
community, many of them making
contributions to the ALGSA in
Alaina’s memory,” said Anna Chow,
ALGSA Board President. “The
Board of Directors decided the
best use of these funds would be
the establishment of a scholarship
fund that would celebrate Alaina’s
aspirations and goals.” After
receiving her Bachelor’s degree in
Human Physiology from University
of Oregon in 2013, Alaina planned to
pursue certification as an Orthotics
and Prosthetics (O&P) Technician
and then obtain her Master’s in O&P
at the University of Washington. She
hoped to one day operate her own
O&P clinic for children with limb
loss. Scholarship funds will be used
to support students with Alagille
Syndrome who choose to pursue
education in the health sciences.
“As someone who overcame
obstacles to pursue higher education
and live a life full of laughter and love,
Alaina was a remarkable inspiration
to the Alagille and rare disease
community,” noted Roberta Smith,
ALGSA Communications Chair.
“The Alliance wants to remember
Alaina by supporting other young
adults as they pursue their dreams.”
During
their
February
annual meeting,
the
ALGSA
Board of Directors
also elected to
posthumously
appoint Alaina as
Board
Member
Emeritus
in
recognition of her considerable
impact in promoting understanding
and awareness of Alagille Syndrome.
At the same meeting, the board
also voted to further honor Alaina’s
legacy through the establishment
of a Junior Board Member position
that recognizes the vital role young
adults such as Alaina can play in
rare disease awareness and advocacy.
Scholarship
applications
and
funding guidelines will be released
in late 2015. Individuals interested in
donating to the Alaina Kaitlyn Hahn
Celebratory Scholarship may do so
via the ALGSA’s website at www.
alagille.org
continued from
Page 2 “Founder’s Notes”
her message is abundantly clear – I
can help you heal, Mom, if you but
let me in.
Thank you all for being part of
our ALGS community. For finding
your way to us, for growing with
us, for learning about this disease
and educating others, for sharing
your experiences with those who
have come to the path behind you,
for facing the challenges of ALGS
with fortitude and strength and
compassion. You are all heroes,
healers, champions to me. I ask
that you continue Alaina’s legacy by
carrying on the fight, demanding
answers, being part of the solution.
You nourish me and keep me strong,
and I hope you are nourished and
strengthen in return by the ALGSA.
With gratitude,
2015
Alagille Syndrome Alliance • 10500 SW Starr Dr., Tualatin, Oregon 97062 • www.alagille.org • (503) 885-0455
3
ALGSA Statement
in Response to Shire's Report on
Topline Results Placebo-Controlled
Phase 2 Studies of SHP625
(LUM001) in Children with
Alagille Syndrome
T
he Alagille Syndrome Alliance
(ALGSA) applauds the efforts
of Shire and other pharmaceutical
companies who choose to invest
their time and resources into
developing therapies for Alagille
Syndrome (ALGS). Shire’s 13-week
Phase 2 IMAGO trial in the United
Kingdom (UK) is one component
of a comprehensive, multinational
study on SHP625 (LUM001) and
the insights produced by this study
will continue to shed additional
light on ALGS. We appreciate the
efforts of Shire’s Head of Research
and Development, Philip J. Vickers,
Ph.D., and his team who reached
out to the ALGS community to
better understand the day-today experience of living with this
complex rare genetic disease. Shire
has indicated ongoing commitment
in studying ALGS and we encourage
our community to continue
participation in existing clinical trials.
With your support and participation,
we are confident that we will one day
have access to new therapies that
improve the quality of life for our
ALGS community.
R
Remarkably RARE
emarkably Rare Designs is
an online store that offers
encouraging apparel and was inspired
by our daughter Emmery who was
diagnosed with Alagille Syndrome.
Emmery was diagnosed at six weeks
old after we noticed that she was
becoming increasingly jaundiced.
During the first year of Emmery’s life
we struggled to understand all of the
ways Alagille Syndrome may affect
her. We struggled with anger and
fear over the thought of all that she
would have to endure. That first year
was really difficult but we discovered
that we had
b e c o m e
stronger than
we were since
her diagnosis.
As I thought
more
about
her and how
she will handle
this life with
Alagille Syndrome, I knew I wanted
to do something to keep us and her
encouraged as she grew. I also was
able to connect with more families
that were affected by rare diseases and
disorders and wanted to encourage
them as well. I thought the best way
would be to do this would be to put
encouraging
words literally
on them, so I
started creating
shirt
designs
that we would
want Emmery
and I to read
to keep us
going. The response to the shirts
was awesome and we have been
able to encourage others and spread
awareness about Alagille Syndrome
along the way. We have also been
able to create tees for other families
as a way of bringing support and
fundraising.
Our Rare Disease
Awareness tee has been very popular
and gives 50% of the proceeds to
the Alagille Syndrome Alliance to
further support research and care.
We hope to continue to grow and
reach more people affected!
We love all of the Alagille Families
and would like to offer a exclusive
discount code for them.
Use coupon code: ALGS during
the month of April and receive 15%
off your order.
Add Your Review @
Great Nonprofits
ALGSmile File
Chord Jaques,
3yrs old
from Thamesville,
Ontario
K
eep us Top-Rated in 2014. Go to
http://greatnonprofits.org/org/
alagille-syndrome-alliance and share
your comments about the ALGSA.
Thank you!
Remember
the Alliance
4
in your memorial
planning & will.
Links4Life™ Newsletter • Jan — Jun 2015 • Volume 22, Issues 1 & 2
Child Star: Malee Ann Crider-Jensen
T
his is Malee.
Our beautiful
6yr old first grader
from Iowa City,
Iowa.
Malee’s
favorite
activity
is drawing and
she has always taken a liking to art.
When she turned 4yrs old she started
drawing almost daily and loves to
draw animals and insects. Malee
adores dinosaurs and animals. Her
room is covered with every dinosaur
figurine and stuffed bird imaginable.
Her favorite animals are birds,
especially flamingos and ostriches
and she hopes to be a veterinarian
someday. She loves to watch animal
documentaries and would prefer
those over a cartoon any day. Malee
also loves music. She cannot go on a
car ride without requesting the music
be turned on. Pop music is her choice
and Katy Perry is tops.
Malee’s favorite food is PIZZA!!
She can’t get enough and if it helps
her grow, we don’t say no!
Malee was born in
Wilmington,
North
Carolina. She was a twin
and she and her brother
were born a month early and
quite tiny though seemingly
healthy. We noticed that
she was not growing as
quickly as her brother was
and at 2 months old brought her
into the doctor only to be told that
she was just “petite”. As another
month passed though, I continued
to feel in my gut that something was
wrong. As a nurse, I could see that
her extremities were thin and her
abdomen was distended. She would
consume 2x’s as much as her brother,
but seemed to be more lethargic.
Again we turned to the physicians
only to be told that we had new
parent jitters. It wasn’t until Malee
was 3 months old that we noticed
the increasing jaundice and I went
on a search for answers. I frantically
Written by Tiffany Crider-Jensen
searched the internet and happened
upon a picture of a small boy. The
resemblance was uncanny. I read the
bio of the boy and recognized all of
the same symptoms I had seen in
my daughter and the diagnosis said
Alagille Syndrome. I immediately
called the doctor and demanded labs
to be drawn to confirm the diagnosis.
After the labs returned with the
abnormal results that I had expected,
we were immediately sent to the
University of North Carolina Chapel
Hill Children’s Hospital for a liver
biopsy. In addition to the biopsy, we
saw cardiology and ophthalmology
where she was confirmed with
peripheral
pulmonary
stenosis
and posterior embryotoxin and
ultimately the official diagnosis of
ALGS was just prior to her turning 4
months old. Following the diagnosis
we requested a consultation at the
Children’s Hospital of Philadelphia
(CHOP) where Dr. Piccoli became
our primary gastroenterologist until
2010 when we moved to Iowa. There,
we came under the care of
Dr. Bishop at the University
of Iowa Children’s Hospital
where we still remain today.
The diagnosis was pretty
devastating to our family.
I had read every research
paper I could find and some
of the information was
so disheartening and created such
debilitating fear and anxiety that we
decided to turn our focus away from
all of the research papers and focus
just on our daughter and her specific
needs. After we made that choice, in
addition to finding doctors that we
trusted, we were able to accept that
this was our path. Life will be what
we make it and we were determined
to make it a positive one.
Malee has diagnosis of the
following: Cholestasis of the
liver, splenomegaly, pulmonary
stenosis, vitamin D deficiency,
hypercholesterolemia, kidney disease
(secondary FSGS- focal segmental
glomerulosclerosis).
Her liver disease has caused the
following symptoms: severe itching,
jaundice, and slow weight gain due to
fat malabsorption.
M a l e e ’s
xanthomas
were
so
severe that
they were
causing her
pain and
impeding
on
the
dexterity of her fingers. That, in
addition to the severe itching which
caused her quality of life to be so
poor, led us to the decision to get an
external biliary diversion when she
was 2 ½ years old. The surgery was
such a success that her cholesterol
dropped quickly from 1200 to 500,
her xanthomas started to fade and
her itching improved dramatically.
Malee has dealt with her challenges
with such positivity that even we
are in awe of her. The daily chore of
medications, special formulas, ostomy
challenges, and frequent trips to the
doctor for visits and tests doesn’t
seem to faze her much. What has
been a challenge most recently is that
being a school aged girl has thrown
a new world of obstacles, including
body image and confidence, into our
lives. We are currently navigating the
difficult task of learning about our
differences and accepting who we
are as we are in the face of bullying.
Not only does Malee have challenges
in her own life, but her twin brother
has Autism Spectrum Disorder. This
makes her even more susceptible to
teasing and bullying. We work hard
every day in our family to give both
her and her brother opportunities to
feel confident and at peace in their
skin in hopes that they will continue
to be happy and positive children.
continued on
Page 6...
Alagille Syndrome Alliance • 10500 SW Starr Dr., Tualatin, Oregon 97062 • www.alagille.org • (503) 885-0455
5
M
Family Spotlight: Schiozzi Family
y name is
Anthony
J. Schiozzi. My
wife, Aryn, and I
live in Coalinga,
California with
our three dogs.
One is our small
mutt Zoey, Billy is our large pit bull,
and Ranger our American Bulldog.
They're much more than pets, they're
my buddies and although they can
be a handful we couldn't imagine our
lives without them.
A few things about me….I love
going to the gym and I love cars,
particularly Mustangs. I recently
bought a 91 Convertible GT Mustang
and have joined a Mustang club. We
go out to meets with all different
types of cars and I'll generally spend
the two days prior to the meeting
cleaning up my Mustang.
6
I learned at about 8 or 9 years old
that I had ALGS. I was diagnosed by
Dr. Parton at Stoneybrook University
Hospital on Long Island, New York.
The worst symptom for me was
the scratching and itching,
especially as a child and being
underweight. I graduated high
school at about 118 pounds
and six feet tall. I was pretty
thin. The negatives of growing
up with ALGS were endless.
The worst few were the weekly
blood tests and doctor office
visits, the constant scratching
which caused a lot of problems
with other kids at school and
alienated me to a large degree.
The positives are that I did get to
meet some great people, fell in love
with reading, and I've proven to
myself that others opinions about
what I can and cannot do are wrong.
There's absolutely nothing that
I can't do if I set my mind to it. I
finished high school and did a year
in college. It just wasn't for me so
I joined the Army in which I had
to get a waiver from Washington
to be allowed to join because I had
Keratoconus caused by the ALGS.
I did have a cornea transplant for
that. They were worried that a hit to
the face would ruin the surgery and
my vision but gave me the waiver
anyway. When I graduated high
school, I was by far one of the smaller
guys. I dedicated myself to the gym.
I'd go in the middle of the night so
there wasn't many other people to
judge me and my lack of size. It was
extremely hard but I started seeing
results. I started really watching
what I put in my body which was
also good for the ALGS. People
started noticing the change in my
physical appearance and I continued
going and extended the time I would
go for. It was a great outlet for all of
the frustration and anger that I was
dealing with. I would spend between
2-3 hours a day there before I hurt
my back and I had peaked at 188
pounds of muscle. Not too shabby
for the skinny, itchy kid with ALGS.
As far as motivation, I wish I could
say something to let kids know that
it does get better but you just have to
give it time to get better.
I got married to the woman
of my dreams this past
summer. This picture is of
the night I asked her to marry
me. I surprised her and had
her friends and family waiting
where we had our first date. My
wife worries about my health.
The main thing that I really
learned having ALGS is that
my family will go to the ends of
the Earth for me. My dad was a
New York City cop and single parent.
He'd break his butt at work and
then come home and start dragging
me around to doctor appointments.
He would mail doctors around the
world about my recent blood work
trying to find out the best way to
treat me. At times he'd know more
than the doctors. He'd do all this in
between laundry, making dinner, and
cleaning the house. My older sister
made sure to take me around with
Links4Life™ Newsletter • Jan — Jun 2015 • Volume 22, Issues 1 & 2
her whenever
she
went
somewhere
and spent a
lot of time in
waiting rooms
while I was
being seen by
the doctors.
Not
really
the place the
average teenage girl wants to be but
I never heard her complain about it
once. So I guess the positive message
I would really send is look around at
just how important and loved you are.
So many people from doctors and
nurses to our families and friends are
there to support, sacrifice, and help
us in any way possible. Aschiozzi@
gmail.com
continued from
Page 5 “Child Star”
Malee has aspirations to be either a
doctor or veterinarian. She also hopes
to write and illustrate a children’s
book someday.
We have been privileged to have
been cared for by the wonderful staff
at CHOP and now the University of
Iowa Children’s Hospital. Dr. Piccoli
at CHOP will always hold a special
place in our hearts for his genuine
support and meticulous care for our
family.
I was also always so very inspired
by Alaina Hahn and her love of life.
Her passing brought us deep sadness
but also inspiration to make every
day count. She was proof that even
a life so shortened can bring such joy
and inspiration to others. Our family
doesn’t focus on the disease. We focus
on Malee and how to encourage her
to be the best
Malee she can be
regardless of her
challenges. Life
will be what we
make it and we
are determined
to make it a
positive one.
Congratulations Shambhavi
Graduating in May 2015 with a Law Degree
My
name
is
Shambhavi
Ravishankar and I’m from Bangalore,
India. I’m a very typical December
Capricorn (haha!!) with ALGS. I
was born on December 27, 1992
and I’m 22 years old. Neither of my
parents (or anyone in the family that
we know of ) have ALGS and I have
a younger brother who also doesn’t
have ALGS. I’ve moved around a lot
to different cities in India and I’ve
lived in Singapore too. My areas of
interest include swimming, reading
everything under the sun, writing,
eating, walking, and working with
clay. I love to make masks and pots
with clay. I have a blog (sayitloudrosetta.blogspot.com) where I write
on various topics of spirituality, life
and living, human psychology, and
dealing with emotions.
My life with ALGS has been
challenging as is expected. I wasn’t
diagnosed with it until I was 5 years
old. In India, at the time, there wasn’t
too much information on it. By
stroke of luck we found my doctor
Dr. Anupam Sibal in Delhi and
things began to stabilize with my
condition. I still get yearly checkups
with him even though I’m doing so
much better now.
Through school I was always a
fan of the arts. World affairs and
history especially. As a result of a
natural progression I took law as my
undergraduate program. My course
began in 2010 in Christ University,
Bangalore and in May 2015 I will
have my graduation. I will get my
BBA.LL.B (Hons.) degree. My
summer vacations have begun and
all of my course work is over. The
fact that I’m graduating as a Lawyer
excites me and relieves me so much. I
feel lucky and grateful to have come
so far. I hope to go the UK to do my
Post Graduation in Human Rights
Law this fall. I’ve gotten into some
universities there but I’m still waiting
on decisions on financial aid, which
is something I really require in order
to study further.
I think the one thing that kept me
going through all of my challenges
was my love for learning. I love to read
and investigate and that love
has transferred to writing
and publishing articles and
legal papers in journals. The
idea that I can contribute
to the existing literature
on various topics, so as
to increase the quality of
academic debate, encourages
me to continue on the path
of intellectual development.
Writing poetry and short
articles/stories to inspire hope and
bring relief is something I love to
do as well. I believe in living in the
moment and loving whatever it is
you are doing. Passion is what will
get you through any challenge. I
strongly believe if your mind
is channeled appropriately
it will help you to transcend
any bodily worries or
troubles. At least in my
case that’s what happened.
A good education and
learning environment with
my parents really set the bar
of excellence for me. They
never let me think of myself
as a victim or as someone less
than anybody else. College
was a big step for me but I’m
so glad I took it because I
feel so much more confident
about myself.
I want to give hope to
people with ALGS
and other rare
disorders
and
contribute
in
some meaningful
way to their lives.
My family and I
didn’t have a lot of help
while I was growing up and
we dealt with our challenges alone
without any knowledge whatsoever. I
want to be able to reach out to people
even if it is just to talk and vent out
their frustrations.
Never lose hope. Create your own
kind of normal. People may not
always understand what
you’re going through but
that can’t be a reason to
stop you from doing the
things you want to do. It’s
your life, so live it such that
you enrich yourself and the
people who love you. That’s
my mantra for living a
happy life. A big Thank you
to the ALGSA for featuring
me in the newsletter. I hope
it will give me the chance to connect
with more people within the ALGS
community.
Please feel free to email me at
[email protected]
Alagille Syndrome Alliance • 10500 SW Starr Dr., Tualatin, Oregon 97062 • www.alagille.org • (503) 885-0455
7
ALGSA
Alagille Syndrome Alliance Newsletter
Alagille Syndrome Alliance
10500 SW Starr Drive, Tualatin, OR 97062
Visit our
website...
www.alagille.org
Board of Directors
Cindy L. Hahn, Founder/CEO
Tualatin, Oregon
[email protected]
Anna Chow, President
Menlo Park, California
[email protected]
Joseph M. Anderson, VP
Brigham City, Utah
[email protected]
Erik K. Luxhoj
Rockford, Michigan
[email protected]
Patricia H. Everett
Alpharetta, Georgia
[email protected]
Thank you to everyone who participated in
Stacking the Odds for ALGS!
William J. Glenn
Fairfax, Virginia
[email protected]
Wanda L. Sheppard
Plano, Texas
[email protected]
Roberta A. Smith
Midland, Michigan
[email protected]
Alaina K. Hahn
Honorary board member
Staff:
Wendy Sparks
Associate Executive Director
[email protected]
Moving?
8
...or changing your email
address? Email [email protected]
and let us know what your new address
is. You don’t want to miss another issue!
Links4Life™ Newsletter • Jan — Jun 2015 • Volume 22, Issues 1 & 2