It’s time for the Senator Brown meeting: Sign here on the “Scroll of Support”

May 14, 2011By 33 Comments

T-minus 56 hours and counting . . . it’s Saturday morning and we are getting ready to drive down to Washington DC. Our first order of business will be packing up our daughter’s college room to bring her back home for the summer.

But the second order of business is the one you care about: Our meeting with Senator Scott Brown will be on Monday at 5 p.m. in his Capitol Hill Office.

You surely remember how I reached out to the Senator via this blog a couple of weeks ago, and the response we all got from reading it, commenting, sharing it and letting Sen. Brown’s office know we all agreed. I heard from the diabetes community, from the people who attended the first meeting with me, from friends and family, from strangers who care about diabetes and the cure, from people from other advocacy groups who want Senator Brown to listen to them, from the woman who inspired me to write (I invited her to come along but she was unable to. She’s lookign forward to hearing the results though). I heard from quite literally thousands of people, many of whom reached out to the Senator themselves. This meeting is absolutely a result of your actions after I took mine. And I want to make sure you all know that my goal is to represent all of you in that meeting.

I have great hope for it. As I said in my first blog, I am absolutely into wiping the slate clean and starting fresh. When you have a loved one with diabetes (or any other difficult disease or situation), you don’t have the luxury of simply giving up. I vowed 14 years ago that nothing would stop me from doing all I could to get support for a cure for diabetes, and certainly an unusually difficult day on the hill would never do that. So I go in with an open mind and full of hope.

My daughter will be sharing the message of life with diabetes. She's a pro and I have every confidence she will help our cause.

That said, I have goals. And responsibilities. First and foremost will be to make sure Senator Brown knows what it means for a person to live their life with Type 1 Diabetes. He will hear that from my daughter, who is attending with me. I want him to understand that we all were left with no choice but to deal with this and that so often (even each day) we are still left nearly defenseless to the havoc diabetes can play on our lives. I want him to not just understand that but embrace it.

I also want him to understand that our community is a connected, vocal, passionate and powerful one. (I am kind of thinking he may have caught onto that by now, though). But I want him to know that we are cooperative too. Should one of us be down to meet with him and he has a bad day, so long as his staff lets us know that he’ll truly listen to what we share with them, that’s going to be okay. But we have every hope he finds it in his heart and elected soul to pay attention to what we are asking for in whatever way he can. He might not always vote our way, but we’d like to truly know that deep thought and true understanding went into the reasons. I remember years ago when there was a vote on the Senate floor to fund diabetes research (this was back before the internet had its power even) and one Senator was still deciding. Via word of mouth, thousands of advocates flooded his phone line. He placed his vote and the funding was in place. And then said, on the record, “I never want to be on the wrong side of that again.” That’s the power advocates have, and we’re showing it here.

I have some specific thinks I hope he’ll be interested in supporting, but I’ll leave that until our meeting and my report to all of you after.

I also want him to think beyond the diabetes community. This whole blog and response and I guess you can say fallout came as a bit of a surprise to me. But it should not have. Because no matter who you are and what you care about (I heard from many, many other organizations and movements and people who care about something; all of whom said this struck a cord for them), there is one thing you crave as an American: an elected official who truly represents you. D or R, Freshman or Senior Statesman/Stateswoman, the thing we expect most of all is their caring about what we think and what we want.

I hope that with this meeting, I can help Senator Brown move closer to doing just that for the diabetes community, other health communities, the people of Massachusetts and everyone in America. That’s all. Of course, I always have been an underachiever. (Tee hee).

I thank you all for your support and promise you I am going there for all of you. Please feel free to comment below on who you are (first names are just fine), why you care about Senator Brown listening (diabetes, another need, or just plain wanting to be represented). I hope it reads like a scroll of national (and international) constituents who want his support.

So: Sign on! I’ll be reporting back in.

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Comments (33)

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  1. Jeff Feuer says:

    You have more supporters than you will ever know, Moira! Best of luck. From me and my whole family.

  2. Stacey Nagel says:

    Moira,
    I’m adding a short note for the Senator…
    Dear Senator Brown,
    My son Jesse, now 19 and away at college has lived with Type 1 diabetes for almost 10 years… Just saying this, brings tears to my eyes. Although he is normal in every way, It is not normal for a child to have to pierce their skin 10x a day to check their blood sugar. It’s not normal to have to calculate the carbohydrates in every morsel of food you eat, then calculate the amount of insulin you have to take so you can eat that food. AND- god forbid you miscalculate- I’ve seen Jesse’s Blood sugar go high into the 500′s and also drop into the low teens .. to the point that he was shaking and sweating profusely.
    Jesse is very active . He’s on his college crew team, he plays basketball , paddleball, snowboards, and rides his bike for long distances… BUT- he always has to think about diabetes/blood sugars etc.. before during and after all of his life’s activities… and he does this pretty well- but sometimes he does miscalculate.. nobody can actually recreate being a working pancreas. There are times he cannot or has to delay these activities because he has type 1 diabetes… That is not normal.. for a teen or anyone.
    I want his diabetes to go away., and the only way that can happen is if you increase funding to find a cure. I want my son to live a long happy life- without complications and worry…

    • moiracmcc says:

      Stacey — you and Jesse remain true heroes to me!

    • Ann says:

      Hey Stacey, what high school and college does your son do crew with?
      Phil did it for all 4 years of high school on the pump but took the pump off
      while on the water.

      • Stacey Nagel says:

        Jesse goes to the University of Buffalo… in NY state..He was a freshman this year.
        He wears his pump on the water…. but at a 75% decrease… otherwise he goes too high…. He missed some this year due to being diagnosed with mono in January…….

  3. Beth McCrary says:

    I have great confidence that you and Lauren will be able to more than adequately convey what it’s like living with type 1 diabetes. You are both passionate and quite knowledgeable! You will do great! Just this past week, my 27 year old nephew (my sister’s son) was diagnosed with T1. After having my pity party and asking why T1 is picking on my family, I came to the realization that T1 is picking on a lot families. I truly believe it is an epidemic. Not sure that you can help SB realize that, because I’m not sure knowledgeable health professionals see that. We had a heck of a time getting a proper diagnosis for my nephew. He was automatically told it was T2, written a prescription for an oral med and sent on his merry way. Proper tests were not performed to determine the correct diagnosis. Thank goodness his fiance’ is T1 and my daughter (his cousin). We knew enough to know he needed to get a second opinion. We are grief stricken that T1 has reared it’s ugly head in our family once again, but more determined than ever to keep fighting for the cure. I know you will represent the Diabetes Community well.

  4. Ann says:

    We wish you well in your efforts and THANK YOU!

  5. Kathleen McCarthy says:

    Go Moira!

  6. Nancy Stenberg says:

    Thanks for what you are doing. 15 years ago when my daughter Kristen was diagnosed at age 9 I went to Washington to do what you are doing now. It is amazing how little people understand about Type 1 diabetes and how it affects the lives of those who have it and their loved ones.

  7. Donna McBrien says:

    Best if luck Moira!

  8. Patty Booker says:

    We are praying for a cure! We know a lot of children with Type 1 Diabetes! It is heart breaking to see what they go through on a daily basis. Fighting for a life! You have our support Moira! Amen!

  9. Jennie says:

    Thanks, Moira, for representing so many of us who deal with T1 in their families 24/7/365…many have summed it up so well in the comments above. We have been dealing with it for 8 years – too long! I support you from SC!

  10. Kim Schumacher says:

    My daughter was 11 when she was diagnosed 5 years ago. Everyday is a struggle to keep her bs in the “normal” range; it’s rarely in the normal range. She is a teenager who is tired of having diabetes already. My prayer is that she does not have to wait too much longer for a cure.

    Thanks for fighting for our children Moira.

  11. Sara says:

    “I never want to be on the wrong side of that again”.

    Proof that we are a powerful group that can accomplish anything we set our minds and hearts on!

  12. Diane Ranaghan says:

    Moira,
    After my son was diagnosed with T1, I had a friend inpart three words to me that continue to keep me focused.

    Brave.
    and
    Fearless.

    My friend, I believe you embody those words.

    Thank you.

    Diane

  13. Maureen Finnegan says:

    Dear Senator Brown:
    My son was diagnosed over 12 years ago at 9 1/2 years old. He has led as normal a life as one can with diabetes. I say as one can, because first & foremost it’s what we must think about every day, nothing can be done spur of the moment, he always has to prepare for his insulin needs, whether its extra glucose for a low blood sugar, or extra insulin for high blood sugar, and always the glucagon in case of an undetected low that will cause him to have a seizure. What you don’t and can’t predict is the hormones, like adrenaline, that raise blood sugar while competing in sports, and when the ‘crash’ will come after the adrenaline has left the system..
    Please do all you can to increase funding to find a CURE, for this disease before our children develop complications and that future parents need not worry.

  14. Jill Geisendorfer says:

    Hi Moira,

    I am signing your scroll on behalf of my son Max who was diagnosed with Type 1 almost 14 years ago. He’s going away to college next year and that brings on a whole new set of worries that I know you are completely in touch with! Just last week, he was so low upon waking that he didn’t remember what happened between his telling me he was low and my bringing him a glass of juice. Soooo, how is this going to work next year???

    Good luck at your meeting with Senator Brown. I know you will do an excellent job representing our community and educating him about what it takes to keep our kids healthy while waiting for the cure that we are fighting for every single day.

  15. michelle says:

    He better realize he is meeting his competition. I will not let this go until you agree to run for his seat! He should be afraid…. very very afraid!

  16. Strength. Courage. Love. Those three words carry so much meaning to those who deal with Type 1 Diabetes on a daily basis. It takes STRENGTH by the one who has Type 1 to try and live a “normal” life.
    It takes COURAGE for those who have Type 1 Diabetes to deal with finger pricks 10x or more times a day, tell those “friends” to wait a minute while I check my blood sugar or “put in insulin” for the food they just ate or to trying to udnerstand or deal with being “different.” And it takes Courage to try and find a cure for when so much is against us.
    It takes unconditional love to want to support those who have to manage the disease. Type 1 not only affects the person who has it, it affects the whole family and community.
    Just think of the cost savings to our health care system if we found a cure!!

    Stength. Courage. Love.

    Mark

  17. Katie says:

    Moira, best of luck. It is my hope that your Senator has “heard” and will now “listen”. I am very fortunate that both of my Senators are aware of the realities of this issue. But I am also sure that any decent human being, once educated, will be on the right side.

    It’s been 18 years since my son was diagnosed at 10. Unless your grandmother has Type 1 Diabetes, it’s not HER diabetes.

    Katie

  18. Lisa Zizovski says:

    I want you to handle Senator Brown a blood testing kit, and ask him to prick his finger to do a quick test, as any seasoned diabetic can do. Then tell him that’s what he does when he wakes up, and if he wants to feel OK all day, he’s going to do it again at 10, then at noon, at 3, before supper and before bed. And then ask if he’d like a syringe so he can do that four times a day to stay alive. Then ask him if he’d like to hear what you have to say. :-D

    • Lisa Zizovski says:

      … just speaking as someone who’s survived with diabetes for 43 years now.

      • moiracmcc says:

        Well said, Lisa!

      • Ann says:

        Wow, 43 years, your are truly amazing. 21 years for my son and that is plenty long. I so relate to what you said, he and I had to make an impact on new schools and teachers as he grew and to make them understand what a Type I diabetic does to survive each day, no vacations. He or I would set up a 15 minute inservice for all teachers, and he would pull everything out and show them what he had to do and tell then how often. Everyone got an orange back then and a sugar vial of water, to draw up air, insert in vial, draw up insulin, flick out air bubbles and then use the orange as the make shift arm or leg or stomach getting the insulin. He was good about answering their questions and they got to understand the importance, routine, and time it takes out of his day to live with diabetes. He also had to explain if my sugar was high, I would also be figuring out how much extra insulin I would have to give to cover the high and count the carbs I am going to consume and then recheck blood sugar 2 hours after eating to make sure it was coming down. The insulin pen and pump were all a God send, but in the end better technology does not make Type I diabetes go away.
        Phil was dx’d 8/4/1990 at 13 months old.

  19. Jane K says:

    Moira,
    Thank you for all your efforts on behalf of those with diabetes. A cure would be amazing. Those who live with diabetes focus on living – right now – and those who love us focus on a cure. That’s a wonderful thing. You are an inspiration – and I do think you should run for office, by the way. I can’t even imagine what life would be like if one of my kids had diabetes (which is why I don’t think about it). I hope the work you’re doing will ensure that one day, kids and parents don’t have to worry about this anymore. You’re awesome – thank you.

  20. Zach says:

    Moira – I know you will represent us well and will make us proud.

    Senator Brown – Be nice to my friend Moira. She was my “chairmom” at the 2005 JDRF Children’s Conference. My son Kyle attended CC2005. He was diagnosed in 2000 at the ripe age of 18 months. Moira is representative of all parents who have children with diabetes – we are very passionate about our children and getting rid of this disease. On probably everything except diabetes, Moira & I are on opposite sides of the aisle politically; but make no mistake we are united on this.

    P.S. Don’t use the “D” (diabetic) around her. A lot of us prefer “person with diabetes” because it doesn’t define our kids.

  21. Madeline and Grace Stanford says:

    Dear Senator Brown:

    Listen for Lauren, she is a great cousin and deserves nothing but the best. She is a true example of prevailing in the face of adversity.

  22. Tell our representative that it should not be so difficult to get his attention on issues that are important to us, his constituents. Alert him that all his promises and assurances will be published and that many eyes will be watching to see if his actions and votes match his words.

    I think that this could be the Senator’s turning point. He may have gotten elected on his image, but now he has to be re-elected on his actions. My wish is that Sen. Brown grows into his oversized job and realizes that he has to provide his constituents with easy access and prompt responses and strong action if he wants to keep representing us.

    Thanks & good luck.

  23. katie pohl says:

    Go Moira! Awareness is the key..until Jake was dx 2 years ago I myself never realized the impact ..this helps remind me how people have no idea what it means. This helps me to calmly explain to people that there is no pill,my son can have sugar, and no-he will not outgrow it.All the while trying to have a half smile! It isn’t easy especially on evenings like last night.To wake up and find your 11 year old shaking downing a coke,with a tube of honey in the other hand. Sure life is normal. Thankyou for all your hardwork and yes you should run for his seat! Your loving neighbor-Katie

  24. smartDpants says:

    I was diagnosed with type 1 diabetes at age seven. Drs. told my parents there would be a cure in “the next ten years” when I was diagnosed. Thirty-one years later, there is no cure. We need all the attention and help we can get in order to fund and support research into curing diabetes–there are some ideas that are near breakthroughs, so we don’t want to let them just fly away. And at the exact same time, we need funding and support for clinical advances in diabetes management like the artificial pancreas, for the 24/7 challenges that we face trying to stay alive every day. Because that’s what we’re doing: Trying our best, with the equipment, drugs and therapies available, to stay alive. We need your help to do that. Senator Brown. Thank you for your time today, and for listening to Moira and her daughter. We appreciate it.

  25. Donna Washburn says:

    Good luck Moira! Do you have a multiple choice test ready for the Senator? Let’s see how much he really knows! I’m so happy that you are so open and willing to give him another chance. Give him all “the numbers” – when it affects someone’s wallet they seem to listen much better. A small investment in research to find a cure will save money and best of all – save the lives of our children. My daughter Sammy has been dealing with diabetes for 10 years now and just finished her freshman year at Emerson College in Boston – something we had to plan ahead – four years – to make sure she was ready to take care of herself (not only safety, maturity and academically, but medically as well). Please wish him well and I pray his children never have to deal with Type 1 diabetes! or any other disease. Love you! Donna

  26. krisfitz says:

    Thank you, many times! Have been looking forward to hearing more about this. Our son Luke, now 2 1/2, was diagnosed at 14 months. I won’t add to what others have said – you’ll do an awesome job of representing everyone – except to add: it is an epidemic. In Seattle, I’m meeting parents AND adults several times every month who are newly diagnosed. Every month for the 1 1/2 years we’ve been in this unwanted yet incredible club. I’m sure if he asks around, he’ll find plenty of connections in his own backyard and immediate network. Thank you again!!!

  27. Brian Riley says:

    As a community we lose so much through not supporting our disadvantaged members.
    It is a mark of a civilised society how well we treat those of us who are not so fortunate.
    Brian Riley
    Hadleigh,
    Suffolk,
    United Kingdom

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