Director's Corner - Boston Children's Hospital
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The Facts about Vacs
By Aric Parnes, MD, Adult Hematologist, BHC
NO CONVERSATION IS COMPLETE THESE DAYS
WITHOUT DISCUSSING VACCINATIONS.
(Continued on page 4)
Issue 19/Spring
2021
Director’s Corner
by Stacy E. Croteau, MD, MMS
Medical Director
WE ARE ALL LOOKING FORWARD TO SPRING, more daylight, warmer days, and
(hopefully) a continued decline in COVID-19. Although plans and activities are not
returning to “normal” yet, we are hopeful that access to and use of the COVID-19
vaccines will spread and increase our ability to safely return to many of our
favorite pastimes. Please get your COVID-19 vaccine as soon as you are eligible.
Presently vaccines are only approved for individuals as young as 16 years old, but
DR. CROTEAU
the next wave of clinical trials looking at the safety and effectiveness for children
(Continued on page 2)
Centerpoints | 2
Let your voice be heard
THE THIRD PATIENT SATISFACTION SURVEY of U.S.
Hemophilia Treatment Centers is now available. HTCs across
the country want to know how satisfied you are with your care.
If you, or someone you care for, had contact with your HTC in
2020, visit www.htcsurvey.com and take the survey, and share
your experience. Data from these surveys have helped HTCs
identify areas where they have strengths or need improvement.
All surveys must be completed by June 30, 2021. n
— director’s corner
(Continued from page 1)
as young as 12 years old are underway. Physical separation von Willebrand Factor levels and was lead by our bright and
from others, interference with access to health care and enthusiastic undergraduate student, Michele Shui.
other supports, and job and income insecurities have led
In collaboration with our platelet biology basic scientists,
to concerning trends in physical health and mental health.
we published findings from our study to learn more
The Boston Hemophilia Center team remains committed to
about how platelet features may contribute to bleeding
helping patients and families with these challenges. Nurse,
symptoms in patients with severe hemophilia: Decreased
Maura Padula, highlights important considerations for
Platelet Surface Phosphatidylserine Predicts Increased Bleeding
health care maintenance and access in this issue. We are
in Patients with Severe Factor VIII Deficiency. Thank you to all
also excited to start a Community Corner section to help
those who chose to participate in these important projects.
promote resources and businesses within our bleeding
disorder community. We have also had recent publications to help increase
awareness and information about new and investigational
While our primary focus over the past year has focused
therapies: Discussing investigational AAV gene therapy with
on COVID-19 and patient care, we have continued to make
hemophilia patients: A guide and 2021 clinical trials update:
progress in improving the care for individuals with bleeding
Innovations in hemophilia therapy.
disorders through clinical studies. In this issue, you can read
more about our ongoing CDC Community Counts project, We continue to update our website with new research
written by our fantastic team of HTC Data Managers. publication information, communications, and educational
content. Please be sure to bookmark our website for
Results from a few of our projects that took place just prior
easy access to these materials. Also like us on Facebook
to the onset of the COVID-19 pandemic have been recently
(BostonHemophilia), as we post and link new content there
published in academic literature. Low von Willebrand factor
as well.
in pediatric patients: Retrospective analysis of 293 cases
informs diagnostic and therapeutic decision making was an Stay strong. Stay safe. n
important study to help learn more about those with low
3 | Centerpoints
New staff at BHC
Mubina Rhee, Hematology NP
The Boston Hemophilia Center welcomed Mubina Rhee to the Bleeding Disorders team
in December 2020. She is a board-certified pediatric nurse practitioner who completed
her Bachelor of Science and Master of Science in Nursing at Northeastern University. She
began her Boston Children’s Hospital career as a registered nurse in 2016, and has worked
in long-term care, home health, and acute pediatric care in several medical and surgical
specialties, as well as working as a pediatric diabetes nurse educator. Prior to nursing,
Mubina earned a Master of Science in Biology and worked in the biotechnology industry.
The clinical application of advancing technologies for diagnostics and therapeutics, as
well as a desire to improve patient health care experiences, contributed to her decision to
pursue a career as an advanced practice nurse. MUBINA RHEE
Mubina is originally from the suburbs of Chicago but has considered the Boston area her home for over a decade. She
enjoys reading, spending time outdoors with her family, playing tennis, and the occasional Netflix-binge. Mubina looks
forward to meeting all the pediatric BHC patients and families in our upcoming annual visits.
Mary Kate (MK) Cavallo,
program coordinator
Mary Kate Cavallo joined the Boston Hemophilia Center team in November 2020
as a program coordinator. MK has been with Boston Children’s since 2018. MK previously
worked as a patient experience representative with the Medical Specialties and
Hematology Divisions. She loves working with children and is especially passionate about
improving the quality of life for patients with chronic illnesses. She is planning to pursue a
Master’s Degree in Public Health and continue her career in health care administration.
MK grew up in Agawam, MA, before moving to Boston in 2014. In her spare time, she
enjoys perfecting her baking skills, spending time on Cape Cod, and playing with her
dog, Cosmo. n
MK CAVALLO
Centerpoints | 4
The facts about vacs
By Aric Parnes, MD, Adult Hematologist, BHC
NO CONVERSATION IS COMPLETE THESE DAYS WITHOUT DISCUSSING VACCINATIONS.
WHAT ARE THE RISKS? WHAT IS mRNA? WHEN IS IT MY TURN?
Our immune systems have memory. They remember what and left thousands more paralyzed. At the time, it was
they’ve seen. So the next time, our immune system sees considered the number one health concern in the country.
it…Bam! Edward Jenner is credited with the first vaccination Fast forward 65 years, polio is gone, but a new nemesis
in 1796, starting with smallpox. He actually used a similar has emerged: COVID-19, and in just one year, it has killed
virus to smallpox — cowpox — after noticing farm workers, 500,000 Americans and counting.
who contracted cowpox, never contracted smallpox. By
Some vaccines work better than others. The polio
injecting cowpox into people, he prevented the spread of
vaccine is 99% effective. Similarly, COVID-19 vaccines
smallpox, essentially tricking the immune system to fight a
from Moderna and Pfizer are 95% effective (see table on
virus it had never seen.
page 6). The new vaccine from Johnson & Johnson is 70%
The concept today is similar. We take small amounts of effective, which does not sound as impressive, but if we
weakened virus or bacteria, or their parts, and inject it into were all vaccinated with Johnson & Johnson’s vaccine, we
people to educate immune systems, so defenses are ready would reach herd immunity, and life as we remember it
for a counter-attack should the walls ever be breached would be restored. These effective rates measure how
again by something similar. And, oh boy, does it work! often people catch the infection despite vaccination. The
effectiveness for all three COVID-19 vaccines is even better
Regarding safety and effectiveness, fewer aspects of when measuring prevention of hospitalization or death.
medicine and science come with more data and experience Mortality (death) from COVID-19 plummets to nearly zero
than vaccinations (literally 225 years of proof!). Besides for those who are vaccinated.
an enormous volume of scientific study, the real proof
is in the track record. Check it out: tetanus, pertussis The influenza vaccine is 40% effective at preventing
(whooping cough), diphtheria, polio, measles, mumps, influenza infection. Influenza is tricky because every year
rubella, chicken pox, hepatitis A, hepatitis B, yellow fever, it changes. New strains that our immune systems no
cholera, tuberculosis, Yersinia (the Plague). This long list longer recognize appear. Fortunately, the World Health
of villains is no longer free to terrorize us (at least in our Organization (WHO) and the Centers for Disease Control
country). Thank you, vaccines. Other vaccines that protect and Prevention (CDC) track the circulating strains day
us include pneumococcus (pneumonia), influenza (the flu), after day, so that each flu season, we can update our
Haemophilus influenza B (HiB), rotavirus, human papilloma immunity and stay safer by re-vaccinating against the latest
virus (HPV), zoster (shingles), and rabies. strains. Admittedly, flu vaccine could be better and new
mRNA technology, similar to what is used in the COVID-19
Jonas Salk developed the polio vaccine in 1955. Before vaccines, may be the key to making it better.
that, polio killed 2000 to 3000 people in the U.S. each year
5 | Centerpoints
In cells, our genes are coded as DNA, and that DNA is questions are logical. Will this vaccine change my DNA?
copied into a mirror image called RNA. RNA is used to Can it affect who I am or my future children? Can it cause
convert the genetic code into protein and protein then cancer? The answer to these questions is an absolute, NO.
does all the work, transporting nutrients, providing The DNA and RNA sit in the cells ready to code for the spike
cellular and organ function and structure, managing protein and then eventually degrade. That’s it. They do not
metabolism, and more. Vaccine science has evolved incorporate into our DNA. They do not change our DNA.
into locating the most immunogenic component of the Another way to think about it is this: Did you know that the
invading organism. In other words, the part that our same genetic material was in all previous vaccines? Yes, it’s
immune systems can most successfully attack. For SARS- true. Because previous vaccines contained the whole virus
CoV-2 (better known as COVID-19), these key parts are the or bacteria, only in a weakened form, they also contained
spikes on its surface, the projections that make it look like the genetic material of those organisms. So what you get
a crown (thus its name Coronavirus). with DNA/RNA vaccines is not only less of the virus than
before, but also the most important part — the code to the
Johnson & Johnson’s vaccine uses a piece of DNA that
spike protein, which is the protein that binds to our lungs.
codes for these COVID spike proteins. That DNA segment
is packaged into a weak virus called adenovirus 26 and A major advantage of the new DNA/RNA vaccine technology
injected into people. From there, the DNA enters our cells is that catching COVID-19 infection directly from the vaccine
and our cellular machinery converts the DNA to RNA and is impossible, because the whole virus itself is not in the
then into protein — the COVID-19 spike protein. These vaccine. However, it is still possible to catch COVID-19
spike proteins without the COVID-19 virus are harmless, infection from the community after getting the vaccine,
but our immune system sees them and, knowing they because the vaccines are not 100% effective. Therefore, we
should not be present in our bodies, forms antibodies to need to keep wearing our masks after vaccination.
attack it. Those antibodies will protect us should the real
Illustration courtesy of the CDC
COVID-19 virus enter through the lungs. The Moderna Depending on the year, between 10,000 and 60,000 people
and Pfizer vaccines work in a similar way, but skip the die each year from influenza in the U.S. (according to the
first/DNA step. Instead, they jump straight to the RNA, CDC), and up to 810,000 people are hospitalized with it
specifically messenger RNA (mRNA), which is RNA ready (see CDC Figure). Despite the low effectiveness rates of
to be translated into protein, and then (this may sound the influenza vaccine, it still manages to save lives — and
familiar), our bodies make the COVID-19 spike proteins lots of them. The CDC estimates flu vaccines already
and our immune systems make antibodies against the prevent 3,000 to 12,000 deaths a year (in the U.S.) and up
spike proteins and those antibodies protect us. All vaccine to 105,000 hospital stays and up to 7.5 million symptomatic
pathways end at the same place: antibodies that protect infections each year. These numbers are staggering when
us. By using only the mRNA or only the DNA that codes the you also consider saved school/work days and saved health
spike proteins, we receive the smallest piece of the virus and quality of life. Remember, these numbers reflect the
possible, while still providing maximum immunity. benefits of a vaccine with only 40% effectiveness and
when only 45% of all people in the U.S. bother to get it.
Many people express concerns about receiving genetic Just imagine the illness prevented and the lives saved if
material, such as DNA or RNA from vaccines. These
(Continued on page 6)
Centerpoints | 6
Table: Vaccines Against COVID-19
Effectiveness Effectiveness
Brand Technology Schedule Against Against
Infection Death
Moderna mRNA 2 doses, 4 weeks apart 95% ~100%
Pfizer mRNA 2 doses, 3 weeks apart 95% ~100%
Johnson & DNA 1 dose only 70% ~100%
Johnson
Data courtesy of the CDC
— facts about vacs
(Continued from page 5)
we all got the flu shot each year (added benefit with herd COVID-19 that week. After receiving dose #2, I had fever,
immunity) or better yet, if we all got the flu shot and it had chills, and muscle aches, and I could barely get out of bed
the same effectiveness COVID-19 vaccines have. the next day. Yet, I felt relieved, relieved that once the side-
effects wore off, I could go to work, continue to care for my
Herd immunity means enough people in the community patients who have or don’t have COVID-19, and know my
are immune to prevent the disease from spreading. protection went far beyond the mask and gown I continue
Herd immunity for COVID-19 is expected to be achieved to wear. I also felt happy, knowing that getting vaccinated
when 70-75% of all people are immune, whether through will protect my family and anyone else in my circle.
vaccination or past infection. Becoming immune through
vaccination is much better than through infection, since a The World Federation of Hemophilia (WFH) recently
significant number of people will not survive the infection. released its vaccination guidelines for people with
Also, the real benefits of vaccination are not isolated to the bleeding disorders. First and foremost, the WFH notes
individual but for the entire community, since the virus can that vaccines are safe, and it encourage all people with
no longer spread once herd (that is, community) immunity bleeding disorders to get vaccinated. Second, patients with
is reached. mild bleeding disorders can proceed with the COVID-19
vaccination. Patients with moderate or severe bleeding
Is there a down-side to getting the COVID-19 vaccine? disorders should discuss with their hematologists what the
Symptoms are common. Allergic reactions can occur, rarely safest approach would be. Many will need to infuse factor
severe. The key allergen inside the two mRNA vaccines is or take some other medication for prevention of bleeding
polyethylene glycol (PEG). People with a known allergy to prior to receiving the vaccine.
PEG can still get the Johnson & Johnson vaccine, since it Unfortunately, the clinical trials for all three COVID-19
does not contain PEG. vaccines did not include children, and therefore no
Worldwide, 228 million doses of COVID-19 vaccine have vaccination is available for people under the age of
been administered, with 68 million in the U.S. This exciting 18 outside of a clinical trial. This important work is in
news parallels the plummeting trends we have all watched progress. Fortunately, younger people are less at risk for
on the daily tracker of new cases, evidence proving we can symptomatic infection from COVID-19.
all contribute in this fight. Soreness at the injection site In summary, vaccines are safe, even for people with
will occur in 75% of people. About 25% of people report a bleeding disorders. Vaccines save lives. They are highly
fever after the second dose (according to the CDC v-safe effective for preventing COVID-19 infection and profoundly
smartphone tracking app) and 40% feel achy. That is a lot, diminish the chance of dying from it. The vaccines take
yet preferable to dying from COVID-19 and preferable to advantage of a new DNA/RNA technology that allows a
sequestering in our homes for yet another year, not able more targeted approach to stopping infection. This genetic
to go to a restaurant or the movies, or see our loved ones. approach will also transform vaccines for other diseases
As one of my patients said, regarding the one or two days and allow rapid development of targeted prevention.
of post-vaccine symptoms, “That’s a small price to pay.” Production and logistical challenges have slowed the
My personal journey: I received the first dose the week roll out, but once we have enough vaccine available for
of Christmas as I was pulled in for urgent back-up in the everyone (and that will be soon), we must all chip in to
hospital, making rounds on a number of patients with reach herd immunity and protect the community. So let’s
roll up our sleeves and get to work. n
7 | Centerpoints
CDC Community Counts
Data Visualization Tool
By BHC Clinical Research Coordinators: Lade Adeniyi, Kate Jolley, Micaela Hayton, & Hae Soo Park
THE CENTERS FOR DISEASE CONTROL COMMUNITY The information provided through the CDC CC project is
COUNTS (CDC CC) project was created to learn more about not only useful to learn more about how many people
risks of infectious disease, common health issues, and have bleeding disorders, but can also provide a sense of
treatment complications for those with bleeding disorders community to those with bleeding disorders. This type of
who are cared for at Hemophilia Treatment Centers (HTCs) project is unique and not available to other patient groups.
across the U.S. The goal of this project is to improve public Bleeding disorders are rare, so it can be helpful to see how
health, so it’s important to make information from the CDC many people have the same or similar condition.
CC project (surveillance) available to the public.
The sense of community established from these data
Basic information (data) collected as part of the CDC CC may be especially important for younger people who
project can be viewed with the CDC Data Visualization Tool, can view how many other people there are who are the
communitycountsdataviz.cdc.gov/blooddisorders. There is same age with the same diagnosis. Day-to-day life with a
no individual patient information shared. The tool allows bleeding disorder can be challenging, so having a project
users to sort information by different groups. Types of dedicated to collecting and learning more about our
information that can be viewed include demographic special population can benefit the whole bleeding disorder
information, such as age and sex, and clinical information, community and can be both empowering as a participant
such as disease severity and history of different viral and hopeful as an observer.
infections. The tool puts information into charts to make
Overall, the CDC CC project provides the opportunity to
it easy to view. By using the Data Visualization Tool, it’s
contribute and shape the medical care that people with
possible to see how many people have hemophilia, von
bleeding disorders receive at HTCs. Also, participation in
Willebrand disease, and other rare bleeding disorders.
this study helps the CDC monitor bleeding disorder trends,
Information about severity, age range, sex, and race is also
which contribute to knowledge that ultimately benefits
available. Users can choose to view the number of patients
the bleeding disorder community. The CDC Visualization
in different bleeding disorder types or sort by other
tool is a valuable resource for participants, the general
information and categories.
public, payors, lawmakers, and health care providers to
This tool only displays information for people who choose learn more about the health and needs of the bleeding
to participate in the CDC CC project, and anyone interested disorder community. n
can learn more about bleeding disorders by working with
Source:
the Data Visualization Tool.
cdc.gov/ncbddd/hemophilia/communitycounts/about.html
CLINICAL RESEARCH COORDINATORS:
From left, Lade Adeniyi, Kate Jolley,
Micaela Hayton, & Hae Soo Park
Centerpoints | 8
Pets on pandemic parade
Sharing our lives with animals
By Peg, Geary, BHC Project Manager
DURING THE COVID-19 PANDEMIC over the past year, DAISY, PEG GEARY’S LAB
people have been quarantined in their homes, and many
have even worked from home. Homes used to be our
havens, but for many, they became places of confinement, Murphy Mac
boredom, and stress. Life has been difficult, but pets have
Elderly pets are beloved
become saviors of sanity for many of us! Those of us with
members of our families.
pets can tell you why…
This is Murphy Mac,
long-time companion of
• Unconditional love is calming, therapeutic,
Deb McNamara, senior
and satisfying.
administrator of Hematology
• Pets are comforting. Many pets like to be close and Hemophilia, at Brigham
physically to their humans and we enjoy their and Women’s Hospital. Although he doesn’t look it,
warmth when they curl up next to us. Murphy Mac is approaching his 15th birthday! Since
Deb works more at home during this pandemic, she is
• Pets are good company. Anyone who has animals
able to spoil him more than ever. After all, he is a sweet
has talked with them, sung to them and shared
and affectionate fella who loves to cuddle!
their feelings. Pets let you know that you are
not alone.
• Our pets are dependent on us. Pets rely
on us for their health and safety. They teach
Cosmo
us responsibility. Cosmo is a 5- year-
old Lhasa Apso and
• Many animals must go out to exercise. Taking
like most dogs, he is
them on walks gets us out in the fresh air and
enjoying all the quality
keeps us physically active.
time he has gotten
• Creative play can be therapeutic for our pets, as with his humans
well as ourselves. since quarantine! His
favorite person is Mary Kate (MK) Covallo who is a
• Special relationships with our pets may be BHC program coordinator. Cosmo loves stealing socks,
stress-reducing. chasing his tail, and barking during all of Mary Kate’s
important Zoom meetings. In the evening, you can find
In this article, BHC staff members share stories and
him curled up on the couch with his humans, being a
photos of their pets who comforted them through the
good boy. MK says, he has truly been a comfort during
COVID-19 pandemic.
these months of quarantine.
9 | Centerpoints
Kuma
For Cliff Haas, BHC 340b operations manager, two pets are better than one during this
pandemic, when they all enjoy each other’s company at home!
Cliff and his family were lucky to adopt this adorable puppy in 2020. His name is Kuma,
which means “Bear” in Japanese, and he is a CavaPooChon (King Charles Cavalier, Poodle
and Bischon Frise mix). Cliff, his wife, and his two daughters adore this mighty ball of
energy. Kuma loves to go on walks and loves his little treats. He is great company for this
busy household and loves to snuggle on the couch when any of them takes a break. KUMA
Totochan, alias Toto
Toto is a Green Quaker Parrot, aptly named because of their habit of quaking at random
times. He has never been a chatty fellow, but he can say his name. He is much better with
kinesthetic tricks, like shaking hands and putting money in the bank. But Toto is certainly
not shy about asserting his territory or taking food from your plate. He’s a plucky fellow!
His favorite foods are rice, pasta, and of course, mango. Toto is frequently free to fly
around and will sometimes assert his dominance by dive bombing Cliff and flying off to
another perch, which is usually hilarious! TOTO
Gaia and Mia
BHC’s research manager,
Macadoo
GAIA
Revital Freedman, PhD, and her This beautiful Lhasa Apso
son share their lives with two is the constant companion
of the most lovable cats, Gaia of Erica Hallson, BHC
and Mia. administrative assistant II.
His full name is Macadoo,
Gaia is a beautiful tabby cat
but he looks more like
who spends her days with
his nickname, Mac. Erica
Revital’s son, while he is
says that 5-year-old Mac makes her and her husband,
studying remotely. She has
Nate, smile every day — and that’s a lot of smiles! Like
made herself at home on his desk and provides him
most pets, he does drive them crazy sometimes. He
with much entertainment, which as we all know cats
can be stubborn when it comes to wanting a treat or
are very capable of doing! In the picture here, Gaia is
wanting to stay out for a longer walk. Yet, Mac loves
mesmerized by a red elastic band.
them unconditionally & can always make them laugh.
Like most other cats, Mia seems to practice social Erica and Nate love him to pieces, and he makes the
distancing from any other living soul — except, of KAI & HANA
pandemic bearable!
course, when Revital has a laptop in her lap! That’s
when Mia decides she’s a lap cat, too. When Revital
tells her, “Cm’on Mia, get off. I need to work,” Mia gives
her a heart-melting
look which says,
“Am I not as
important as your
work?” And, of
course, she is!
MIA
Centerpoints | 10
Health maintenance is key…
even during a pandemic
by Maura Padula, RN, CPHON
IT’S HARD TO BELIEVE THAT A YEAR HAS PASSED since hear from our administrative staff to schedule your next
the day I hastily gathered up a few essentials to bring home comprehensive hemophilia visit when it is due.
from my desk at Boston Children’s Hospital, and set up
While virtual visits will continue for now, it is important
shop to start working remotely from my dining-room table.
to recognize that some care can only be done in person
I did not want to get too comfortable. I told myself this
— even during the pandemic. We strongly encourage
would only be a temporary situation, maybe a week…or
you to continue to receive timely recommended health
two at most.
maintenance through your/your child’s primary care office.
At that time, much of the work of health care organizations Similarly, some care related to your bleeding disorder
across the country — and across the world — experienced diagnosis must also be done in person. Examples include:
an abrupt pause as we responded to the rapidly-expanding immunizations, administration of initial doses of new
pandemic. While non-urgent care and elective procedures therapies, routine and urgent imaging, lab monitoring,
were initially suspended, there was a relatively prompt physical therapy, and emergency room visits. We recognize
recognition that routine care had to continue, albeit in a that for many, the thought of entering a health care facility
modified fashion. during the pandemic can be daunting.
Here on the pediatric side of the Boston Hemophilia Center, We would like to provide some reassurance in this regard
we quickly learned how to do much of our work virtually. and let you know about some of the many safeguards that
The team meets together with patients and families via a have been put in place at Boston Children’s to keep you and
telemed platform to complete annual bleeding disorder your family safe during in-person visits:
comprehensive visits, an essential aspect of care. During
Pre-visit phone screening
this visit, the medical, social work, nursing, and physical-
therapy teams review and update care plans, discuss any You’ll receive a screening call prior to your visit to review
changes and challenges brought on by the pandemic, any potentially concerning symptoms, and any current or
review key bleeding disorder education, and complete a recent COVID-19 positivity in your household. For positive
modified physical-therapy assessment. screens, a decision may be made to delay care or to change
the appointment to virtual if clinically appropriate. If in-
There have certainly been some benefits to this new person care is timely/urgent, it will proceed as scheduled,
routine, and we have received positive feedback about and appropriate precautions will be in place for your visit.
the ease and efficiency of the virtual platform. We have so
appreciated how you have allowed us into your homes and Masking
shared with us how COVID-19 has affected you and your When visiting the hospital, we ask that you wear a mask.
family on a very deep and personal level. Upon arrival, you and your child (if developmentally
appropriate) will be asked to change into a hospital-issued,
With the approval of the COVID-19 vaccine for adults earlier
medical-grade mask.
this winter, we have started to see the light at the end of
this long tunnel. However, for now we will continue to meet Social distancing
virtually for comprehensive visits, until it is safe to meet
You will see there are far fewer people on campus than
together in person as a group again. You can expect to
usual, given the large proportion of staff working from11 | Centerpoints
ZOOM VISITS: Teenager, Nizar Bouyacoub, is having a telehealth appointment with his BHC multidisciplinary team.
home and the large number of patient-care encounters can share food, closeness, and special times. I am hopeful
occurring virtually. When you come for in-person care, we your homes will be too.
ask that only one caregiver accompany your child, and we
Until that day, we as a center will continue to be diligent,
request that siblings remain at home. This also helps to
to deliver timely and safe care to you and your family.
reduce the number of people present in the hospital at any
Rest assured, our team is always here for you, and we
given time.
hope you will continue to partner with us to promote your
Physical spaces in waiting and common areas have health during this challenging time. Until we meet again —
been modified to promote social distancing. We ask that whether in person or virtually — stay safe and stay well.
you do not arrive more than 15 minutes prior to your
On the adult side of Boston Hemophilia Center, a similar
scheduled appointment; this reduces the number of people
model and safeguards have been put in place. For annual
congregating in waiting areas.
comprehensive visits for adults, providers at Brigham and
Lab appointments are now required for all lab draws. This Women’s Hospital are also holding virtual telehealth visits.
too limits the number of people in the waiting room at any If you have a follow-up or emergency visit, your physician
given time. or nurse practitioner will determine the best way for you to
be seen.
A year into the pandemic, I can still be found working from
my dining room many days of the week — albeit now with If you have any questions about medical appointments for
an actual desk and a more reliable internet connection. I adults with bleeding disorders, please call 617-278-0707 or
am hopeful one day in the not too distant future, my dining for children with bleeding disorders call 617-355-6101. n
room will once again be a place where family and friendsCommunity corner Centerpoints | 12
Local businesses
THE COVID-19 PANDEMIC HAS BEEN HARD on many small and family owned businesses. In this new section, Community
Corner, we highlight local businesses owned by member of the Boston Hemophilia Center community, as well as links to
resources that may be helpful to our patients and families. If you are the proprietor of a small business and part of the
Boston Hemophilia Center, please let us know so that we can feature your business in an upcoming issue. Please check out
these restaurants below.
Richards is a New American style restaurant, located at
1193 Cambridge St, Cambridge.
Owned by one of our Boston Hemophilia Center families,
Richards is currently offering takeout and delivery.
Richard Graham, makes everything from scratch —
all the
condiments, pastas, sauces, and he butchers all proteins!
Don’t miss this chance to experience a unique delicious
menu and support a local BHC family.
Check out their website Richards02139.com or call
617-714-3626 to order.
Chef, Jeffrey Mitchell, with his wife and business
manager, Terri Mitchell, own and operate The Talkative
Pig, a restaurant located in South Chatham. They create
Mediterranean-inspired dishes using fresh ingredients and
traditional family recipes. Jeffrey and Terri are committed
to supporting local farms and businesses. Terri is a patient
of Aric Parnes, MD, at the Boston Hemophilia Center, and 2642 Main St, South Chatham, MA 02659
she and her family support BHC. See their menu and hours PH # 508-430-5211
on their website: thetalkativepig.com Email: eat@thetalkativepig.com13 | Centerpoints
Online resources
The COVID-19 pandemic is now over a year old and many of us have had to adjust to new situations. But there’s been a
bright side as people come together to help and support one another. By popular demand, we’re providing a list of online
resources. If you do not have access to a computer or need other resources, please contact your BHC social worker:
Jackie Miranda, MSW, LICSW, pedi social worker, #617-355-5250, Jacqueline.Miranda@childrens.harvard.edu
Amanda Stahl, MSW, LICSW, adult social worker, #617-732-7197, astahl@bwh.harvard.edu
Family/Children’s Camps
Spring is coming and it’s time to think about camps for your children and/or
family. The two most popular camp experiences in our region are the New
England Hemophilia Association (NEHA) Family Camp and Paul Newman’s
Hole in the Wall Gang Camp (HWGC). Follow the links below and see which
opportunities are right for your family.
NEHA Family Camp, New Hampshire
newenglandhemophilia.org/event/camp21/
Since 1992, NEHA has offered a Family Camp program to anyone with a bleeding disorder who receives care in New
England. This event focuses on achieving two key goals — increasing and enhancing self-infusion skills, and community
building. NEHA is currently monitoring the COVID-19 situation and will decide whether to host an in-person event from Aug.
15 – 21, 2021 or provide a virtual event as they did successfully in 2020.
Hole in the Wall Gang Camp, Connecticut
holeinthewallgang.org https://www.holeinthewallgang.org/programs/summer-camp/
The Hole in the Wall Gang Camp offers week-long residential summer sessions.
Food Resources Scholarships
There is good news for persons with bleeding disorders
The Greater Boston Food Bank (GBFB)
gbfb.org/covid-19-update and/or their family members who are heading to college
The GBFB distributes food resources throuhout Eastern and other secondary educational programs this year.
Massachusetts via the Brown Bag Program, School-based There are many college scholarships available for you.
Pantries, Mobile Markets, Commodity Supplemental Food Please check out the links below for information about
Program, and Supplemental Nutrition Assistance Program. application requirements and deadlines. Most of the
scholarships range from $250 to $5,000, and application
Community Servings
periods have begun.
servings.org
Nutritious, made-from-scratch meals delivered to
Hemophilia Federation of America (HFA)
hemophiliafed.org/scholarships
homebound and critically ill persons across Massachusetts.
HFA provides an extensive list of the 2021 financial awards
Project Bread
by eligibility and amounts.
https://www.projectbread.org/get-help/covid-19-hunger-food-
resources-for-households National Hemophilia Foundation (NHF)
hemophilia.org/community-resources/financial-assistance/
COVID-19 food resources for Massachusetts residents.
scholarships
Additional Food Assistance Programs during the NHF posts scholarship lists yearly.
COVID-19 Emergency
mass.gov/doc/food-assistance-during-the-covid-19-emergency/
downloadContact: 617-355-6101 childrenshospital.org/hemophilia.com
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