"Floppy Babies Don't Get Better" & My GoFundMe Campaign

[IdaBriggs]

I am officially asking for money for a personal cause I believe in, so if that offends you, please feel free to hit ignore on this thread.

The link is http://www.gofundme.com/idabriggs and I am looking to raise approximately $9,500 total, preferably with at least $4,300 before Friday so I can go to New York City next week, do some training on "how to deal with the media" and spend two days being interviewed by members of the national media. This is not a free event, and I believe the money will be well spent if I am able to reach the people who need to know about my efforts: mainly, families of premature infants and special needs children. So far there is over $1,400 sitting in the account.

I have been posting on DU about my efforts on behalf of the Preemie Growth Project since 2009. I have been a member here since 2004, and some of the old-timers may remember my postings about my challenging twin pregnancy and the amazing awesomeness of my beautiful twins who arrived in February of 2007 weighing in the 4-pound range, delivered after an emergency c-section at 32 weeks due to pre-eclampsia. But that was only the beginning of my journey, because my twins started achieving normal growth and developmental milestones in a matter of months instead of years, and I figured out why and then proved it could be repeated for other premature babies.

In 2011 my efforts on behalf of this outreach (I started jumping through hoops to get my conclusions investigated by credentialed researchers back in 2009) bore unexpected fruit with a young "floppy baby" who began responding to the protocol within a matter of days. I was told repeatedly in the most condescending manner possible that "floppy babies don't get better" (except this one did, and so have a whole bunch of others since) and truthfully, almost walked away from the effort in frustration, but in 2012 a 9-year old girl diagnosed with cerebral palsy got up out of her wheelchair/her hyperspastic hands normalized in sixteen week, and the next thing I knew I was accidentally running an impromptu parent led feasibility study with 271 children from 35 states/6 countries, fighting flame wars on DU that still sting to this day and figuring out the particulars for a commonly undiagnosed medical condition responsible for the deaths of infants and children worldwide, that was literally leaving the survivors in wheelchairs, and appears to be responsible for a high percentage of sensory processing issues, including in an autism only subset.

Solid data was obtained on 134 of the children recruited, and 111 of them (83%) saw improvement in a minimum of four of the eight categories we tracked. That meant that 4 out of 5 children responded to the protocol - for children born prematurely, 9 out of 10 them responded, while non-preemies only saw 8 out of 10 respond. 33 boys under age 4 *ALL* responded, leading me to suspect that boys are more susceptible to these deficiencies. My co-author and I were privileged to share the results in a presentation we made to the Michigan Department of Health & Human Services last week (September 21, 2015), and you can view that presentation here:

https://onedrive.live.com/view.aspx?resid=AA4BA6ADFA380C7F!181&app=PowerPoint&authkey=!AKUdPc8LiR5ndI8

It may be idiotic (heaven knows my personal budget thinks it is), but I have always done this as a volunteer thing, and received zero compensation for it. I have devoted full time effort to this since January after a "blessing in disguise" situation occurred and I was laid off in December from my contract IT position at one of the automotive companies; I thought I just had to finish the report, and I could put the whole thing to rest, and then it was "just do this research poster" and then "just do this presentation in Lansing" and...the reward for a job well done always seems to be more work! Lol!

I am luckier than most in that my beloved husband has been extraordinarily supportive of my efforts, but we are used to being a two-income household, and while the sacrifices I have made may seem mild to others, they are real to me. At the end of the day, I cannot justify asking my family to lose $9,500 from our family budget so I can go to New York City so I can "spread the word" that SOME children with neuromuscular issues may actually be misdiagnosed and suffering from correctable micronutrient deficiencies.

So, I am asking for help. I don't sell ANYTHING. I have never charged a dime for my information and/or knowledge. If I don't raise at least $4,300 by Friday morning, I will have to wait until the next event happens in April, and that is an opportunity cost in unnecessary loss and suffering that makes me cringe.

If you can donate, please do so. If you are willing to share the link, please do so. If you can only offer up positive thoughts or prayers, I will take them as well. If you can only kick this thread, I will accept that with gratitude. And if you, or someone you know needs this information, I will be happy to answer your questions (but please do me a favor and look at the presentation first - I am working on a more "parent centric" shorter version, and hope to have variants done before I head off to New York, assuming I am able to do so).

Thank you in advance, DU. This matters. Please help. Thank you.

Again, the GoFundMe link is: http://www.gofundme.com/idabriggs

[underahedgerow]

1. Ida your work sounds fantastic, it's all really amazing, so congratulations and good luck to you...

Have you got a Facebook page?

[IdaBriggs]

3. Thank you! And yes ---

The "official" page is https://www.facebook.com/Preemie-Growth-Project-107268132641172/timeline/

But parent discussion was mostly spent in the Parent Group: https://www.facebook.com/groups/500593246627247/

While somehow I am doing most of my posting/answering questions lately in a Hypotonia Support Group: https://www.facebook.com/groups/348186918564276/

I am working on updating the webpage http://www.preemiegrowthproject.org/ which is in the middle of a complete overhaul, so stay tuned there.

I also keep getting personal friend requests (https://www.facebook.com/ida.briggs) but have to warn folks it is my personal page, so my raving liberal tendencies, periodic whines and rants, and pictures of my awesome kids will be on display regularly.

And thank you for your kind words!!!

[underahedgerow]

5. That's excellent, all good news! Might I suggest that you link to the FB page from your Gofundme and

vice versa on your FB page if you haven't already?

And you should also get it out into the twitter universe, if you haven't already. You know, with all that EXTRA time you have, between juggling babies and kids, info tours, web page overhauls AND your political activities! Girl, you need a new clock with more hours on it and weeks with more days! I don't know how you do it!!!!

Cheers!

[IdaBriggs]

8. Lol! The Facebook stuff is done (but not links on the GoFundMe -

good thinking there! I don't tweet tho - seems a dangerous path for someone who has "foot in mouth" disease as often as I do!

[MindfulOne]

12. Have you posted to a variety of Facebook groups related to the effort?

Groups devoted to:
Preemies;
Nutrition;
Pediatrics;
Public Health;

And especially to global and international efforts-- there are billions to be saved in cost and treatment prevention, not to mention quality of life issues.

Heck, the Gates Foundation and others ought to be tossing some change your way.

Have you tried these?

[KamaAina]

2. I just learned that a dear friend was a "floppy baby"

not a preemie, but due to her neuromuscular disability.

I'm now having a hard time not picturing this stylish, accomplished young professional as a floppy baby!

[IdaBriggs]

4. 30% of the children diagnosed with Cerebral Palsy are NOT preemies.

It was a very big deal when we figured out "Maternal Deficiency" made such an impact; the veterinary studies clearly state show that nutritional deficiencies in pregnancy can impact two generations down, so the bottom line is, if mom doesn't have it (because of being born prematurely herself or having Crohns or Celiac or Yeast issues or being malnurished, etc.) she can't pass it on to her offspring. It was very exciting when those children (8 out of 10) responded to the protocol.

[KamaAina]

6. She doesn't have CP, either

I don't know what it's called, but she uses a wheelchair, is a little person, has tiny little hands, and has a tracheotomy; she puts her finger over the plastic tube in order to speak.

[IdaBriggs]

7. There was one day back in January of this year...

When I was having one of those "maybe it is time to just walk away from this effort" moments. I was tired, overwhelmed, and just feeling like there was no hope for my efforts to actually make a difference without some super sacrifice on my part (see "multiple months of no income&quot . I was at a leadership conference, and as fate would have it, there was a young man there who has cerebral palsy. It was a leadership conference, so everyone was being all kinds of upbeat and positive energy. I approached him, and asked if I could ask him some very personal questions. He was gracious and said yes.

"Would your life have been better if you had never had cerebral palsy?" I asked him.

He was stunned, gaped a bit, tried to rally, and then gaped some more. It was definitely not what he expected.

I explained that I thought I had figured out how to PREVENT some (not all) forms of cerebral palsy. (I have since learned to phrase it more politically correctly - cerebral palsy by definition is incurable, so anyone who gets better never had cerebral palsy in the first place because they were misdiagnosed. See how that works?) Anyway, I babbled at him for a few minutes, and explained how I was REALLY tired, and wanted to quit, and truthfully, I was looking for his permission, in an absolution type of way, to be able to do so without a guilty conscience.

That man nearly SMACKED ME - "NO! YOU CAN'T QUIT! THIS IS TOO IMPORTANT!" And we talked for a bit, and I confess I teared up, and I haven't quit yet (as tempting as some of my overwhelmed and down moments have been).

I don't have any data on how this will impact anyone older than twelve years of age. It is on my to-do list. I have thoughts, of course, and the reality that the younger the child, the faster they respond has me worried for the young adults, but it still needs to be investigated.

Step one, step two....there is a lot of work to be done still. Children can have these deficiencies and other medical conditions, too. This seems to me to be a piece of a bigger puzzle, with these special needs children being "canaries in the coal mine" for nutritional issues.

[KamaAina]

9. Ed Roberts, the founder of the disability rights movement, said that the most interesting parts

of his life came after he contracted polio.

Temple Grandin has said that if science came up with a little blue pill to cure her autism, she wouldn't take it, because she fears she would lose the abilities that have made her a leader in the field of livestock handling facility design.

[MindfulOne]

10. Amazing! I pray you get the funds you need. And, your children are adorable! Jennifer is, too.

But the backstory about the resistance to your discovery (slide 48 and beyond) is very angering.

In all sciences, all disciplines, there is a network of traditionalists and they abhor change, or change that occurs from spaces outside their domains.

Had you been a member of the inner circle of university researchers, working with the establishment, you might have been met with more respect and acceptance, it's hard to be sure.

Your discover is a threat to the status quo, to the medical establishment and to the corporate pharma establishment, I think.

Go Ida, go get them, this is too important not to succeed.

And you with those babies, seeing them get older and thrive, OMG!

[IdaBriggs]

11. I will not lie about the frustration level I have experienced - it has been "educational".

I do not believe it can be called "evidence based medicine" when people ignore any "evidence" that does not go along with their pre-conceived notions of how the world works.

In one of my snittier moments, I compared my battle cry of "Nutrition Matters!" to trying to explain to 19th century physicians that the germs on their hands were KILLING WOMEN with people ignoring both and uncounted women and children dying because not only are germs invisible, but so are minerals. One of the people I respect told me it will be twenty years before this gets investigated adequately. Shall I be silent while the children die?

So, Don Quixote like, I am off to New York City (hopefully).

[MindfulOne]

13. Kick, this is an important cause.

I suppose some of the members may be donating precious funds to candidates right about now, but we can't do much about that.

Best wishes, I hope this is a winner by Friday...