#28 News

#28 News
Thursday, January 30, 2025 by Deb Vellines

Additional news and resources with information I haven’t included on the resources page or in the #17 blog.

Www.webrn-maculardegeneration.com

Fantastic site with lots of information. There is an option on this site to subscribe to a newsletter to get updates.

Under the “resources and help” section (in the column on the left) are links for financial help for the drugs I mentioned in (#18). In that same section are reviews of books dealing with macular degeneration.

AMD forum is also in the same section as the above. You can read about the experiences of others in this section. The questions section is well worth the time to read how others reply. If you don’t see the answer to your question, try putting it in the search block. If your question doesn’t come up, you can enter it.

Are you on Twitter? Today I learned about a talking blood pressure machine at Maxi Aids https://www.maxiaids.com reduced to $60.
http://lowvision.preventblindness.org/resources-2/suppliers-of-reading-materials-in-audio/
This site contains lots of information about audio products available for those with low vision. Under resources go to “Suppliers of reading materials in audio.” For example, under “B” are Bibles on audio.
http://lowvision.preventblindness.org/research-and-developments/a-guide-to-research-in-dry-amd/
This site contains updates on studies for both wet and dry macular degeneration. Be warned: the information is technical.
macuhealth.com
This site is basically selling a drug with supplements which claim to improve vision. Please don’t order the drug without first talking to your eye doctor.
Unregulated Stem-Cell Therapy Causes Severe Vision Loss for Three Florida Women
By Ben Shaberman on March 16, 2017

A report today in The New England Journal of Medicine (NEJM) describes the cases of three women with age-related macular degeneration (AMD) who lost much of their eyesight after receiving ocular injections of stem cells derived from their own fat tissue. The women had good enough eyesight to drive before the procedures. Each paid $5,000 to receive the injections from a private clinic in Sunrise, Florida. The New York Times and other major media outlets have published news stories on the NEJM report.

The administration of the stem cells was performed without oversight from the U.S. Food and Drug Administration (FDA), because, the clinic claims, the cells were the patients’ own — the tissue was extracted from the patients’ bellies. However, the patients said they believed they were participating in government-regulated trials, because the study was listed on www.clinicaltrials.gov, a website maintained by the National Institutes of Health. What’s important for the public to know is that the website listing does not mean that the procedure is approved by the NIH and has undergone FDA review and authorization.

In an accompanying NEJM article, scientists from the FDA say the fat-derived stem cells, “are being used in practice on the basis of minimal clinical evidence of safety or efficacy sometimes with the claims that they constitute revolutionary treatments.”

“The tragedy for these three women, and others who opt for these unproven, unregulated treatments, is they don’t understand the risks and lack of evidence for efficacy,” says Stephen Rose, PhD, chief research officer, Foundation Fighting Blindness, the world’s leading private funder of research for inherited retinal diseases. “As seen in this case and others reported in the literature and press, participation in a study for an emerging therapy that is not regulated by the FDA or another well-recognized regulatory agency like the European Medicines Agency in Europe is fraught with dangers and can lead to unexpected serious consequences.”

Dr. Rose says that the Foundation regularly receives inquiries from people who are inquiring about unregulated stem-cell trials in the United States and around the world. Some of the alleged therapies cost tens of thousands of dollars. “Understandably, people are anxious to do whatever they can to save their vision from retinal diseases like retinitis pigmentosa and AMD,” says Dr. Rose. “Unfortunately, there are many unregulated ‘trials’ that are taking advantage of the desperation associated with loss of vision, and peoples’ vision and lives are at risk. Patients participating in legitimate clinical trials of potential treatments do not typically incur any treatment fees. A fee associated with participation in a clinical study may be a red flag. Anyone contemplating participating in any clinical trial should consult their ophthalmologist or physician first.”

FDA-regulated clinical trials for emerging stem-cell-derived therapies for AMD and RP are underway in the United States. Most of these studies are at an early stage and primarily evaluating safety. For more information on these studies, contact the Foundation at [email protected] or visit www.fightblindness.org.

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This is a scary article! Be careful about checking the facts.

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Readers – What news have I missed? If you know of a website or blog that will help others, please share that information so I can pass it along.