Are you a To-Do List person?  Personally I am more of a “long term goal, how in the heck do I get there” person.  We are growing and we need help, so I have compiled a “To Do List” of some simple but important tasks to help us hit some of the goals for The IBC Network this fall.  I would love your input and help.

The first project is foremost on my mind and unique to making this disease have the personal face needed.   The other projects are listed by level of commitment.

First up, our YouTube channel:  to-do-list

We have a YouTube channel for IBC education. We hope you view and share.  Also if you wish, we would love to have a one minute (60 seconds) or less video footage of women diagnosed with IBC or family members talking about their IBC experience. Educational, real, not any of this “have you been touched by cancer” junk. You don’t have to send us a long story, it needs to be just a clip.

One of our opening themes will focus on misdiagnoses.   So a video could have this text like this sample:

“My name is Terry and I was told my swollen breast was menopause in one “boob”

or  “My name is ____ and my sister/daughter/mom was told__________.

These opening clips could be used to show how common misdiagnoses are for Inflammatory Breast Cancer.  That is easy, right?  See Christine’s for an example, or Terry’s who had many misdiagnoses, this video refers to the first one.

However, we do have really easy tasks.

Level of Commitment – Low

  1. Ask friends to “like” our facebook page
  2. Share our website
  3. Do you tweet?  Follow and retweet us. It is fun and you might make some new friends.  @talkibc

Level of Commitment – A Little More

  1. Could you write your local radio stations and ask them to play our PSA?  If you have not heard it, you can listen to it here.   I have included a sample letter for you to use in the mentioned link.  If the station agrees to play the PSA, please let us know so we can follow up, give them updated PSA’s and thank them for their support.  We also need more text written for PSA’s so we are open to input.
  2. Like to email? Prior to the pink fatigue hitting in October, share this link, it has some good general breast cancer myth busters, including IBC info.
  3. Chat us up!  Please encourage attendance to the  hunts we have on the calendar this year. These are not virtual events but real events with need of people to attend.
  4. Blogger?  Is anyone not a blogger now a days?  Please crosslink us theibcnetwork.org and if you ever write about your IBC experience, never refer to it as breast cancer. ALWAYS use the word “Inflammatory.”  We understand the difference but others do not.  Education is key.
  5. Like to write to newspapers?  If you could, when you see a story like this in the news,  write the reporter and ask them if they know what IBC is? Ask them to do a story on IBC.
  6. Please use your birthdate or some other celebration event to request donating to The IBC Network Foundation via Facebook.  We have been very grateful for the support we have seen via Facebook fundraisers!

Just a little quiz to see if you are still reading.  Do you see what is upsetting to me in this story?

Level of Commitment – Heck Yes, I Am In!

  1. Do some or all of the above and you will be our champion!  Also if you have a work skill you wish to donate, please contact us.  We are all volunteers and could use skilled volunteers to help with quarterly or yearly projects.
  2. Ask if your local medical team is willing to offer a free CME to their team.  The credit is available on our website and our YouTube channel and the one hour credit is free.
  3. Money?  Did you think we forgot?  Nope, where is your treasure?  I have been told you can tell what a person values by where they place their dollar. Time is precious, so we appreciate your help, but a buck or two collected is how we fund research.  I think people are slow to donate if they can’t donate impressive sums, but just a $10 a month donation is huge to us. Don’t be shy. You money goes far with us and we spend it carefully.  Also if you have friends who are looking to fund cancer research, tell them about us. If your employer has a matching plan, ask them to add us to their matching program. We have a very low overhead, and funds donated to us, get to go to research, but we need your help. So suggest us to friends in a way that really encourages them to donate. Show them what we have funded to date.
  4. And just for because, if you share my personal pet peeve- those silly hurtful, not at all helpful, cancer games that travel the net that at the next invite, could you reply with one of these two articles.  

We have some massive projects outlined, like a phone app to help disseminate medical information and clinical trial info for IBC, but we have to pace ourselves, as they say, “How do you eat an elephant?  One bite at a time!”

Hope always,

Terry Arnold




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