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You Are Here: IC
Network : IC Angels Program
In
response to the tremendous outpouring of support and condolences in the
memory of ICN Asst.
Manager Diane Manhattan-Lopresti who was tragically taken from us
on October 16, 2003, we have created a new program to honor her memory.
Diane
was a true IC angel. She believed in angels and she believed in support.
She inspired others to keep trying. When a patient was down, she lifted
them up. When a patient was confused, she offered helpful information.
When a patient was crying, she gladly shared her shoulders for anyone
to lean on.
An IC Angel
is someone who believes, in their very heart of hearts, that no one should
suffer alone. Someone who is willing to lend a helping hand, a moment
to talk, a supportive email, a chat in our chat room or an orientation
for a newly diagnosed patient. An IC Angel is also a role model, a patient
who is active and involved in the IC movement. They may run a support
group or perhaps just offer support by email. When an idea strikes, they
share it with others to get them motivated and involved. They might write
an article, create a new resource or share a helpful tip. An IC Angel
believes that by working together we can make a difference.
On the ICN,
our IC Angels will honor Diane's memory by maintaining her legacy of
action. These aren't huge, daily jobs. They are small acts of kindness
that can be temporary or may just need one task done. These are the projects
that Diane and I had talked about. Real needs for real IC patients of
all ages. You might help by running a support group or by contributing
a story that helps to explain IC to children. Disability rights, job hunting
(or how to work from home), how to locate affordable medications.
What's
needed?? VOLUNTEERS!!!!
(1)
Support Group Angels
Would you consider starting a support group in your
town or state??? This is such an important need. Even if you just work
with a handful of patients twice a year, you can help break the isolation
of others, offer support and encouragement and truly make a difference.
It's the most important gift of all! Please visit our activism
corner to review our support group guide to see if this could work
for you. If not, read on! There many other ways that you can be an IC
angel!
(2) Support
Group Coordinator
We need an IC angel, preferably one who has already
run a support group, to help facilitate good relationships between support
group leaders so that they can share their success stories and have their
own opportunity for support. Must be a self starter and just want to hang
out with these lovely people! You may do an SGL newsletter or just encourage
occasional meetings so that support group leaders can talk to each other
about what issues they face, what great programs they run, etc. etc. Where
does a support group leader go for support? Let's fill that need now!
(3) Newbie
Angels
We need some seasoned IC patients to help guide newly
diagnosed patients in a positive, supportive and encouraging way. You
can't be focused on your health.. you have to be able to focus on giving
unconditional positive support to newly diagnosed patients in need. The
emphasis here is a POSITIVE, ENCOURAGING & HOPEFUL attitude. If you
have done your reading, know your therapies, and understand basic self
help, you can be someone, like Diane, who gives comfort to someone who
is confused and frightened. The more the merrier.
(4)
Angels for the Children with IC
We need a volunteer or team to help create new resources
for children with IC, age 12 and under. We've begun a new Kid's Corner
that will offer age specific information and, hopefully, a rewrite of
our children's book so that it talks about IC for a child with IC in an
easy, hopeful way. Are you a mom of a child with IC? Help us to help other
moms by sharing your wisdom on another parent can survive. This person
may run a special mailing list just for parents of children with IC.
(5) Teen
Angel
Just imagine being a teenager with IC. In addition
to the embarassment of leaving class, just imagine how difficult it might
be to socialize. We need your help to create our new TEEN ZONE that covers
school, dating, socializing, and a teen cool diet.
(6)
Senior Angel
Imagine having IC and being quite elderly and unable to speak for yourself.
Worse, your judged as having dementia just because you have to use the
restroom. There are so many issues that need to be explored here. How
do we care for a senior citizen who is diagnosed with IC but is in a convalescent
hospital? How can we help those families?? There's great room to do some
real research here.
(7) Angels
Who Work At Home
While many IC patients do work full time, others can't.
But, they can still work from home. We need to add some resources that
will help a patient figure out what their options are. Remember, both
Diane and I, worked from home on the IC Network for years. Jill took a
class in html which began the ICN 9 years ago. Diane taught herself how
to read research studies and web programming from home. Don't sit at home
believing that your life is over. You can work! You can contribute!
(8) IC
Angels of the Airwaves
We need PR and lots of it. IC and bladder disorders
need more and more public relations because there are still patients suffering
in silence at home alone! We can reach them... and each article published
that talks about IC does! All it takes is a phone and/or a note to your
local paper. Ask them if you can tell your story about IC and why your
community needs to be more informed and compassionate. I want this to
be a committee of about six or more patients who won't take no for an
answer. We're going to start with nothing and building something new...
so if you have experience in PR or you just want to make sure this happens,
volunteer to be on this committee.
(9)
Angels for Low Income Patients
Let's admit it... having any medical condition can
cost enormous amounts of money. Diane and I have always been passionate
about creating resources for patients who were hurting financially. There's
nothing worse than having to choose between buying food or buying a medication.
The IC Drug Assistance program guide helped patients find sources for
affordable meds. We need someone who will continue this tradition and
create more real life low income tips! From finding food banks to rental
assistance programs, we can help each other.
(10) Angels
for the Holidays
Our Holiday Program has helped to send holiday meals to
families in need, and presents for children who would otherwise have nothing
on christmas morning. Are you inspired?? Would you help to launch this
program this year?? Must be respectful, compassionate. Will help to review
applications, select participants and make appropriate purchases.
To
volunteer: Please click here to visit our IC Angel Volunteer Center,
located in our ICN Message Boards near the bottom of the forum list!
"There
have been Angels in my life. When they haven't arrived with a blast of
trumpets or a rustle of wings, I've known them just the same. They performed
their acts in human guise, sometimes borrowing the faces of family and
friends, sometimes posing as well-meaning strangers. You have known them,
to, when just the right word was needed, when a tiny act of kindness made
a great difference..or perhaps you heard a voice whispering in a night
of sorrow, the words not quite clear but the meaning unmistakable. There
is hope..there is hope."
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