1. Rare Disease Awareness Network
Together We Can…
FEBRUARY 19, 2013 VOLUME 10, NUMBER 1
Our mission is to provide
awareness, advocacy,
and education regarding
all aspects of Rare
Diseases.
Welcome!
Hello again! Welcome to our February edition of Rare Disease Awareness Network's
newsletter! Big things are happening this month! Perhaps you have noticed that our
Facebook posts have been translated into Spanish. We would like to thank Ana Forty
for being our official translator!! It makes RDAN more accessible and for that we are
forever grateful. We are also gearing up for Rare Disease Day! We are kicking off
the awareness events with our First Annual Blood Drive. Be sure to save the date!
Please feel free to share with any and all who you feel may enjoy being a part of our
efforts to spread the word about Rare Disease Awareness. Thanks!!
RDAN Blood Drive:
Rare Disease Awareness Network has teamed up with Southcoast Hospital Group to
organize a blood drive. Here are the details:
Date: February 24, 2013
Time: 8:30-3:00
Location: Seaport Inn - 110 Middle St. Fairhaven, Massachusetts 02719
What to Expect When You Donate:
When a prospective donor arrives, the staff conducts an interview to discuss his/her
medical history and to make sure he/she is able to donate.
Potential donors also fill out a confidential questionnaire on their medical
backgrounds. These measures safeguard the health of the donor as well as the
health of the person receiving blood.
The whole process of the interview and the actual donating usually takes 30 to 35
minutes.
The donor's body replaces the fluid lost from donation in 24 hours and the red blood
cells in about eight weeks.
Many thanks to the Seaport Inn for the generous offer to provide the space for this
event. We look forward to seeing you there. Be sure to bring two forms of
identification. Email to schedule your appointment today!! Walk-ins are also
welcome! Be sure to save the date!! Ohh…and after you donate, enter to win HUGE
PRIZES including an autographed Celtics basketball and autographed Todd English
books!!!

2. Friedreich’s Ataxia (FA) is a
debilitating, life-shortening,
degenerative neuro-
muscular disorder. About 1
in 50,000 people in the
United States have
Friedreich's Ataxia; yet, it is
the most common of all
forms of Ataxia. Onset of
symptoms can vary from
childhood to adulthood.
Childhood onset of FA is
usually between the ages of
5 and 15 and tends to be
associated with a more
rapid progression.
Signs and Symptoms
 loss of coordination
(ataxia) in the
arms and legs
 fatigue - energy
deprivation and
muscle loss
 vision impairment,
hearing loss, and
slurred speech
 aggressive
scoliosis (curvature
of the spine)
 diabetes mellitus
(insulin -
dependent, in most
cases)
 a serious heart
condition (enlarged
heart -
hypertrophic
cardiomyopathy)
There are currently no
treatments for FA. Patients
are monitored for symptom
management.
Spotlight on…
Friedreich's Ataxia (FA)
Written By Imran Khan
My name is Imran Khan. I am a 23-year-old System and Information Engineering
student at the University of Virginia. I was diagnosed with Friedriech’s Ataxia (FA)
when I was 18 years old. Although my first symptoms started when I was about 12 or
13 years old, I just kept on ignoring them until I was a senior in high school. It was
only then that I realized something “serious” was wrong with me and I needed to find
out what it was.
After a period of about 6-8 months and rigorous
testing, seeing a multitude of doctors, and some
wrong diagnoses, I was diagnosed with the
genetic disorder called Friedreich’s Ataxia (FA).
Until then, I had never heard of FA, and it was at
that point that my life changed drastically. I
began looking up any and all information I could
find on FA: its symptoms, its progression, and life
expectancy. This made me even more depressed
about my future. I graduated from high school a
couple of weeks later and honestly speaking, with
the progression of FA, I did not think I would last
long at college; although I never told that to
anyone.
Regardless of knowing the possibility, and the near inevitability of failure, I continued
my education with the same confidence in my abilities that I have today. I always
knew and trusted my abilities, but there always was a question mark on other things
in my life which were not directly in my control - mainly my FA progression.
I have gained tremendous support from friends, professors, advisors, and especially
from the Learning Needs and Evaluation Center (LNEC) at UVA. That support has
given me the confidence I needed to know that I can achieve greatness despite of ANY
obstacle I face - even Friedreich’s Ataxia.
I have also recently started a Facebook page called “Fight Against Friedreich’s Ataxia”
(www.facebook.com/FAfight). Since its creation and through much hard work, it
currently has over 3,000 members. Many of them are also suffering with FA and they
have been willing and courageous enough to share their unique stories with us. The
page also serves as a support group that helps raise awareness to find a cure for
Friedreich’s Ataxia.
For the last two years, I have also actively participated in the Disability Awareness
Week at UVA. I helped in organizing, planning, and encouraging fellow peers to
attend the events. I also continue to raise awareness about inaccessible areas at UVA
and the negative messages they send.
The point I am trying to make is that you should never give up and always believe in
your abilities. Although FA may have hindered my rate of progress, it has also taught
me a lot of valuable lessons in life. Ultimately these challenges and my experiences
have made me what I am today, and for that I am grateful! 

3. RDAN Board:
Rebecca Alves,
President
Susan Green, VP
Jamie Alves,
Secretary
Jennifer DaCosta,
Treasurer
Patricia McArdle
Esq., Director
Dawn Richards
RN, Director
Rosemary Arruda,
Director
Liz Costa, Director
Jennifer Bolarinho,
Director
Colin McArdle,
Director
Rare Disease Day 2013
We are hoping that we can ask for your assistance with our second annual Rare
Disease Day events. As you may recall, 10% of the American population has been
diagnosed with a Rare Disease. To help spread the word, we are asking that
retailers and business owners provide customers with a 10% discount on February
28th
. When customers ask why they are getting a discount, we are hoping
businesses will provide a bit of informational materials concerning Rare Disease
Awareness. So, you may be wondering how you can help. First, we are looking for
business owners who would like to participate. Second, we are looking for "Regional
Captains" who would like to spearhead the event in their area. The beauty of this
event is that it can happen anywhere in the world. The more businesses that we get
on board means more people who are made aware of the cause. In turn, that
means greater hope, greater compassion, and a greater understanding of Rare
Diseases. Would you be willing to assist us? Please send an email to
savebecka@comcast.net if you are willing and able!! It would mean so much to so
many! Below, is a list of those participating already! Check out our Facebook page
for the addresses and contact info. Thanks a bunch!!
Main Street Formals – Acushnet
Treasure Coast Tackle – Online
JB Photography – Fairhaven
Keith's Auto Body – Fairhaven
Top Shelf Bar and Grill – New Bedford
Munchkin Mania – Acushnet
Wicked Kickin' Cheesecake – New Bedford
Azaria Tanning and Spa – Acushnet
Backstage Dance Academy – New Bedford
Happily Ever After Cakes – New Bedford
Shakeology – online at www.myshakeology.com/jennwheels
Stephen & Company – Dartmouth
Soccer Post – New Bedford
Miss Z Photography – New Bedford
Mendonca's Florist – New Bedford
Bear-Ly Used Consignments – Lakeville
AlyChris – New Bedford
Lightworks Sound and Production
Shear Cutz – Acushnet
III Suns – New Bedford
Dusty Roads – Online
Rochelle's Restaurant - Acushnet
Contact Information:
Please feel free to contact us at any time. Send us an email at
savebecka@comcast.net. Also, we can be reached through the mail at:
Rare Disease Awareness Network
PO Box 30061
Acushnet, Massachusetts 02743
Facebook:
Come join our facebook family!! “Like” us at www.facebook.com/SaveBecka. Be
sure to invite your family and friends to “like” us too!
Thank You!!
We cannot thank you enough for your support!! We hope you have enjoyed a few
moments with us and hope you will be back for more next month!