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 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.

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. 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.
  3. 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.  
  4. Donating your IRA distributions to a charity – A qualified charitable distribution (QCD) is a distribution from a Traditional or Roth IRA made directly by the IRA trustee to a qualified charitable organization when the IRA owner is age 70 1/2 or older. QCD may satisfy the client’s minimum distribution (RMD) and up to $100,000 of QCD may be excluded annually from an individual’s taxable income. If you are of the age that this option might be a benefit to your tax situation, please consider us at the IBC Network Foundation, as we do qualify for this option.

We have some massive projects outlined, 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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