Advocacy
We work hard to keep up to date on issues affecting the bleeding disorders
community. We help individuals confront health insurance issues and
access information and resources, as well as keeping abreast of issues
that can have an effect on the health and well being of the bleeding
disorders community as a whole. We work to educate our local politicians
and health care officials about hemophilia and the resources for those
affected to maintain quality of life.
Camp Blood Brothers and Sisters is the oldest as well as one
of the largest camping and outreach programs for kids affected by hemophilia
and other bleeding disorders. It is open to children with bleeding disorders
ages 7-16, as well as their siblings. It's a safe haven where kids can
enjoy a fun, memorable experience with others their age, while learning
more about their condition. They can talk to others affected by
hemophilia, and gain more self-confidence as a result.
In the summer of 2004, we partnered with Paul Newman’s Camp Painted
Turtle. We are excited about this new partnership and look forward to
many great adventures. Camp is specifically designed to meet the
special needs of children with hemophilia and other bleeding disorders
and provides activities that are hemophilia friendly. Counselors
and staff are recruited and trained about bleeding disorders, and many
of our volunteers have bleeding disorders themselves. We also
have an extraordinary medical team on duty 24 hours a day, who are specially
trained in hemophilia care. With the help of our faithful donors, we
are able to provide this wonderful experience at no cost to the families
we serve.
CLICK HERE TO DOWNLOAD THE 2010 SUMMER CAMP APPLICATION
Case Management
Clients with hemophilia and related complications often need case management
to help them deal with the complex, and sometimes overwhelming, issues
of finding the appropriate care and resources. Often individuals with
Hemophilia and multiple infections, such as HIV/Aids, or Hepatitis,
or those suffering from the affects of multiple uncontrolled bleeds
feel overwhelmed with their medical needs. Our social worker assists
clients in finding resources to take care of themselves more efficiently
and effectively.
Christopher Pitkin Memorial Scholarship
This scholarship is open to all members of the hemophilia community,
including spouses and siblings. Applicants must be pursuing a post high
school college or technical/trade school education. Amounts of scholarships
vary from $500 to $1000.Based on availability of funds. Please contact the foundation for further information.
Click Here for an Application- Word
Emergency Financial Aid
Because of the extreme costs associated with Hemophilia, often
reaching in excess of $125,000 per year, many families experience financial
hardship. Some are simply dropped from their insurance due to the cost
of medicines or they cap out their insurance. Some may lose their jobs
because of frequent absences due to bleeding episodes and infections.
For these individuals, our emergency financial aid helps bridge the
gap by providing temporary assistance providing food, clothing, shelter,
transportation, and monetary aid to pay necessary utility bills.
Family Retreats
They are designed for families to have a fun filled weekend of activities
and respite in the mountains. Life with bleeding disorders can be extremely
complicated and there is great value in sharing experiences with others
in a supportive environment. Retreats provide a great opportunity for
families to enjoy time with others affected by hemophilia and gain confidence
in dealing with hemophilia on a daily basis.
Family Information Day
Each year families affected by Hemophilia are invited to a
day packed full of training, medical updates, product seminars, workshops,
and peer support groups specifically geared towards meeting the current
needs of the hemophilia community. Past sessions have included topics
such as updates in medical treatment, gene therapy, Hepatitis, Creuzfeldt-Jacob
disease, and HIV, Stress Management, Blood Safety, Insurance Reimbursement
/ Policies, and the importance of exercise and fitness. We are committed
to aiding those we serve in educating themselves so they will be empowered
to make informed decisions regarding their medical care.
First Step
It is a program for the Hemophilia Foundation of Southern California
specifically designed to support families of infants and young children
with hemophilia and other bleeding disorders through support and education.
We help to educate parents about bleeding disorders and their varied
complications, assist them in finding the resources they need to make
informed choices about their child‚s care. We also provide opportunities
for them to interact with other parents in an atmosphere where mutual
support, personal sharing, and peer education take place.
HemoGames
It is a relatively new program specifically designed to teach
children ages 5-14, with hemophilia and other bleeding disorders, about
sports. Children with bleeding disorders who are sometimes not allowed
to play sports get an opportunity to try something new, whether it is
basketball, tennis, golf, or softball and baseball. It is similar to
a sports clinic, where the children learn the fundamentals of a sport
and then have a chance to compete in a trial game with others in their
age group. Although our main goal is to teach children the fundamentals
of popular non-contact sports, the long-term advantages of participating
in this program extend far beyond that.
Parents are invited to stay as well. This way they can watch their kids
in action, while they participate in an informative educational seminar
in which pediatricians, hematologists, and physical therapists share
the importance of exercise in keeping their children‚s bodies
fit and healthy. They will learn which sports are the safer for hemophiliacs
to participate in, what precautions they should take in preparing their
child for participation, and most importantly what the overall positive
impact, both physical and psychological, participation in sports activities
holds for their children.
Holiday Parties
Our holiday parties provide children with the opportunity to enjoy a
fun-filled time with their peers. The children have a chance to play
games and make arts and crafts to decorate their homes or give as gifts.
They also get the chance to sit with Santa and his elves - bearing gifts
for all! It is great to see the children excitedly opening up their
gifts and playing with their new toys together.
Publications
They are an important element of the services we provide to
our community. Our quarterly newsletter provides updates on the Foundation,
as well as the bleeding disorders community at large. Focusing on prevention,
treatment options, availability, cost, and purity of replacement factor
products, as well as, issues that directly affect their lives such as
Aids/HIV, Hepatitis, advances in gene therapy, legislation, etc. Our
web site provides similar information as the newsletter, as well as
links to pertinent information that directly impacts the lives of our
constituents.
Resource Library
We also have a full resource library on many topics relating to the
care and treatment of those affected with Hemophilia, von Willebrands,
and other bleeding disorders. If you are interested in more information
about bleeding disorders, inhibitors, ports, methods of treatment, etc.,
please contact our office and we will be happy to assist you.
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