Mothers,
and everyone
else, can take a sigh of relief. We just learned that the
federal government has upheld the current ban on gay men
donating blood. Many may think that we, as the bleeding
disorder community, are being unforgiving, but as recipients
of the blood supply they must understand that we assume 100%
of the risk associated with any errors and/or new pathogens
that may arise. For these reasons we remain strong and
diligent on these points.
While we
live in such seemingly good times all we ask is that
everyone please consider our role. Unless you have a
bleeding disorder, or live in this community and know people
with bleeding disorders, there really is no way that the
outside world can understand the level of complications that
could and can occur if we do not stay strong advocates.
And
strong advocates we will be. Another key issue that we must
remain on target with is health care reform. Issues are
already starting to crop up that may greatly affect us. For
example, the state of Illinois missed a deadline for
expansion of the insurance coverage for those with
pre-existing conditions. This situation is being directed
to a lack of action on the Legislatures behalf but there are
also many other issues with this type of expansion –
including how much it is going to cost until the Insurance
Exchange is put into place in 2014 to replace the necessity
for high risk insurance pools. We are meeting with state
administrators to share our point of view and also to
explore creative ideas that may be available for us to help
get insurance for those not covered right now.
I do need to have some case examples. If you
are a person who has not been able to get coverage please
give me a call so that I can share your situation in these
important meetings.
As
you can see – just because it is summer – we do not take any
down time from staying strong for the Illinois bleeding
disorder community. It is also time to gear up for camp.
We are very excited about our new partnership with Camp
Shaw-waw-nas-see in Manteno, Illinois – where Camp Warren
Jyrch will be held from August 8 – 14. Two groups, our
Youth Leadership and our Marcus McClure Family Camp
participants, were able to take advantage of the beautiful
surroundings and strong programming the camp is sharing with
us.
All who took part in these two events
endorsed our move.
Camp
applications are coming in fast and furious. If you have
not already completed yours (or your children’s) please do
so today. It is going to be a great year and we don’t want
any one to miss out.
This summer
is also filled with key education events. Watch your mail
for invites to upcoming Blood Brotherhood, Women and Latino
Events. Also – save August 23 – for the Board of Director’s
Annual Awards Dinner. It will be held once again at the
Marriott Midway. In addition to sharing with the community
an overview of our accomplishments from the past year we
will also be honoring key members from our community.
Please join us for this special celebration.
I want to
send a special thank you out to the Taproot Foundation for
the grant opportunity the Hemophilia Foundation of Illinois
received. This organization provides volunteer assistance to
help organizations like ours address strategic business
situations that we could have never afforded. We have just
finished working with an outstanding team of professional
volunteers who have helped the HFI Board of Directors and
staff examine what our brand strategy will be for our
future. This group worked with us to learn about our
organization both from us and through a series of surveys of
people representing all facets of our community. This is
how they see HFI and we all feel that it is a pretty dynamic
view.
The Hemophilia Foundation of Illinois
supports families affected by inherited bleeding disorders
such as Hemophilia and von Willebrand disease by providing
its members with the unbiased medical information and
resources that allow them to live a healthy and active
lifestyle. This neutral information is especially important
for families seeking answers and support soon after the
initial diagnosis.
HFI also fosters a welcoming community for
families to meet, interact and share information and advice.
Through education and support, HFI helps its members
advocate on their own behalf with public and private
insurance providers, medical services and government
agencies, while representing the bleeding community in the
world at large.
The above
statement, and all of the work from this project, sets the
basis for the Board to re-invigorate our organization’s
strategic plan and begin taking steps to keep us growing and
changing to adapt to your needs. Look forward to hearing
more about this in the months to come.
As always,
we could not do any of this without the wonderful support of
each and every one of you. Our fundraising program is
strengthening as the economy slowly recovers from this long
recession. We continue to watch our expenses – and a
special thank you goes out to every one of you who have
understood when we have cut out a meal from a meeting or
done something else to save a little money. This has gone a
long way to keep us financially strong during these troubled
times.
We
appreciate all of the support from everyone who participated
in the 13th
Annual Driving fore Hemophilia on June 14. We had a great
crowd, about 150 people, who enjoyed a damp – but not rainy
– day of golf. Thanks to the generosity of our sponsors and
players we raised about $120,000. Everyone enjoyed playing
at Indian Lakes and we plan to hold the event there again
next year – on June 13, 2011 – save the date.
The main
reason for moving the Golf Outing to June is to make room
for the Inaugural Year of the Hemophilia Walk. We are all
gearing up for September 18 in Diversey Harbor on the
beautiful Chicago lakefront where we hope to bring together
over 500 people from our community to raise money and
awareness about hemophilia and other related bleeding
disorders. Every day more and more people are signing up
teams to take part in this famil-oriented fundraising
event. We are just on the verge of going over the $60,000
mark for pledges already, so don’t hesitate to sigh-up your
team today!
While it is
important to raise money I think this event comes with a
much bigger value – raising awareness. The Chair of this
year’s Walk, Ramona Towner, was not able to get a definitive
diagnosis on her bleeding disorder until she was 38 years
old. This is simply not acceptable. We must find ways to
help people understand that the technology is there for our
children and adults to live strong productive lives. Please
come out and join me in sharing this very important message.
It is very
easy to get involved. You can sign up as a team or as an
individual on the front page of our web site –
www.hfi-il.org.
Just click on the walk logo and it will take you right to
the registration. This site is very comprehensive and gives
you a lot of support in doing a grassroots fundraising
program that will help you achieve whatever your goal is for
your team. Someone said at the kick-off meeting that it
will be easy to reach our $100,000 goal – all we need is 100
teams to raise $1,000 each. I know – easier said than done
– but I have to tell you that by simply sharing my story on
facebook and other social media I am well on the way to
raising this amount myself already. If you have any
questions please do not hesitate to contact Aaron Flatt, our
Walk Coordinator, at
312-427-1495 or
walk@hfi-il.org.
All the best,
