Tag Archives: adult stem cells

How You Can Help Raise Awareness About Adult Stem Cell Therapy

ClaireClaire Hooper is a member of Patients For Stem Cells. She needs stem cell therapy herself, and recognizes that helping everyone rescue their right to this life saving therapy is the best way she can help herself.
Here she shares tips on how to do an online petition, and how she succeeded in landing an interview, which will educate readers and amplify the reach of her stem cell petition. Everyone can follow Claire’s example and make change happen!


ONLINE PETITIONS
Here is my stem cell petition, followed by the link for signing it.

Using Our Own Stem Cells to Cure Disease
President Obama: please stop the FDA’s assertion that the use of our body’s own adult autologous stem cells (AASC) are a “biological drug” and thereby subject to FDA regulation. Allow us to use our own stem cells to heal our bodies of chronic illnesses and injuries. AASC therapies offer a less expensive, comparatively safe, and more effective outcome for many diseases than do conventional medical treatments. Other countries are perfecting cures for cancer, diabetes, heart diseases, kidney diseases and many other chronic conditions. FDA control of a person’s own stem cells stifles medical progress and threatens the lives of those dying from curable illnesses.
Petition Background: I, like millions of other Americans, suffer from chronic back and knee conditions that could be cured with the use of my own stem cells in a safer, cheaper, and more effective means than by the options offered by conventional medical treatments.

Click HERE to sign, and use the share buttons below this post to get this story and my petition out to as many contacts as you can. Social media is a powerful tool that can be used to educate everyone about this complex topic.

For anyone who is thinking about posting a petition online, here is what I have learned from my own recent experience.

♦ The title tells the story.
I titled my petition: Using One’s Own Stem Cells to Cure Disease.

♦ Be brief; use simple, straightforward language.
The message had to be short and simple. It was a challenge to convey in so few words what the use of autologous (one’s own) stem cells is and what the FDA is doing to suppress it.

♦ Think about timing.
I started my petition in mid-December of 2012. In hindsight, I realized December was a poor choice of timing because people are busy with holiday expenses, travel, family, etc. Nonetheless, I embarked upon this experiment.

♦ Use as many platforms as you can.
Signon.org provides a convenient place to begin. After launching the petition on signon.org, I posted it on Facebook incessantly, often paying to “promote” the post to boost its profile. I posted my petition on StemCellPioneers.com and PatientsForStemCells.org where I began connecting with other stem cell advocates.

♦ Follow up, use personal contacts.
I sent e-mails and private messages to friends and family asking them to please sign and share my petition. I made phone calls to friends who hadn’t signed it because they did not understand the issues. The immediate responses were impressive; then the pace of the number of signers slowed to a halt. It looked as if the petition had lost its momentum after such an auspicious start.

MEDIA COVERAGE

Patients have made recent progress in getting national coverage about the loss of our rights to life saving stem cell therapy in Business Week, Forbes and NPR. This makes it easier to get local coverage.

♦ Approach journalists you respect.
Contacting the right journalists can help. I got lucky. A friend of mine, Andrew Strange, who works for University Press at Lamar University, saw and signed my petition. He then told me another journalist there, Chelsea Henderson, was doing a story on stem cell treatments. He asked if I would mind his giving Chelsea my contact info; I agreed for him to do so.

♦ Connect with your allies, both individuals and organizations.
Another friend who saw and signed my petition, Ange Busceme, connected me with stem cell advocates and stem cell patients. I joined Patients for Stem Cells. These groups helped to revive my flagging petition. Through them, I met more stem cell patients and advocates. They are an amazing source of stem cell research, inspiration and support!

♦ Prepare for interviews. DO seek help from people who know more than you!
When Chelsea, the journalist, called me about doing an interview about my petition, I got cold feet. Thanks to all of you who encouraged me and offered support! Preparation steadied my nerves. I made notes to use as prompts for my talking points. I thoroughly reviewed all the available information and made an outline of the issues I needed to discuss. I used materials provided by the stem cell advocacy groups to illustrate the issues in a straightforward graphic format.

The interview seems to have gone swimmingly! Now the journalist has received permission from her editor to do an entire series devoted exclusively to autologous stem cells this coming fall!

♦ Keep following up.
Good luck with your petition and interviews! If you have suggestions or want to share your own experience, use the comment box below.


About the author: Claire is no stranger to making positive changes for various causes. She founded Hooper’s Heroes, which provides scholarships for socioeconomically disadvantaged high school and college students who demonstrate academic excellence and a commitment to community service. She also works with Stable-Spirit, a nonprofit organization providing hippotherapy and equine-assisted therapy to people dealing with the effects of crisis, trauma, physical challenges and other issues.


Want to become a member of Patients For Stem Cells? Just subscribe to our blog.


 

How Safe Are Stem Cells?

Stem Cell RiskHow safe are adult stem cells? This has become a hotly debated argument. There are financially conflicted scientists who frequently cry wolf over the safety of adult stem cells. Taken from your own body, then expanded to a therapeutic dose, mesenchymal stem cells are showing promise for treating many previously incurable illnesses. Why the objections? Theses scientists hold patents in, or receive grant money for, embryonic or IPSC stem cell research, which could be threatened by this safer therapy, already in use and saving lives today.

Paul Knoepfler, PdD, a scientist at UC Irvine pursuing induced pluripotent stem cell (IPSC) research, is one of these critics. In his blog he challenges patients who have had adult stem cell treatment: Critically reading science papers: response to patient on MS stem cell literature.

As evidence of danger, he presents 3 reports covering 9 patients that had adverse outcomes.

Patients For Stem Cells conducted some fact checking. We found 66 studies in pubmed.gov, showing there have already been over 2,154 patients treated with their own EXPANDED mesenchymal stem cells. These reports consistently conclude treatments were well tolerated, with little to no side effects other than transient fever, and that further research is warranted. This is evidenced by the 1,630 patients in 54 EXPANDED mesenchymal stem cell trials currently underway, listed at clinicaltrials.gov.

See our report on these findings How Safe Are Stem Cells?.

Arnold Caplan, PhD, from Case Western Re serve University and a leader in stem cell science has recently stated that more than 250 mesenchymal stem cells trials are ongoing or completed. The 120 trials we found are a subset of this larger number, because we limited our search to expanded or cultured cells, since this is what the critics have been crying wolf over, and calling for the FDA to withhold this life saving therapy from patients.

We challenge the critics to disprove the growing evidence base that shows adult stem cell therapy is safe.

Samantha Wilkinson,
Member, Patients for Stem Cells
www.patientsforstemcells.org

Lacks opposing viewpoints: Stability at head of FDA good for biotech

Biased Journalism Category: ARTICLES THAT LACK VETTING OF SOURCES AND/OR OPPOSING VIEWPOINTS
Media item: Stability at head of FDA good for biotech
Publisheed by: Washington Business Journal
Author: Bill Flook, Staff Reporter

On Nov. 8th, 2012 the following letter was sent to Bill Flook, followed by a second request on Nov. 16th, 2012. No response, so we are posting our comments here, and invite a reply from Mr. Flook.

Dear Mr. Flook,

Our group, Patients For Stem Cells, represents patients who have been denied access to our own stem cells because the FDA has regulated our cells as drugs. We oppose this decision and believe it is a violation of our basic rights. Your article, “Stability of FDA good for biotech, say GlycoMimetics CEO”, fails to acknowledge the vested interest that Rachel King, BIO and others have in maintaining the relationship they have established with FDA Commissioner, Margaret Hamburg. In the interests of good journalism, we know that you will undoubtedly be in favor of presenting opposing viewpoints and vetting those that you use as sources in your article. We would like a chance for a few of us to speak with you or correspond with you. Thank you in advance for the opportunity.

Regards,
Patients For Stem Cells