tag:blogger.com,1999:blog-401303964563152307.post7484023803712533620..comments2024-03-17T12:02:12.410-04:00Comments on Love That Max : The shocking lack of cerebral palsy research: Moms speak outEllen Seidmanhttp://www.blogger.com/profile/01433429847255621203noreply@blogger.comBlogger19125tag:blogger.com,1999:blog-401303964563152307.post-56475043287378992122016-10-31T22:14:41.312-04:002016-10-31T22:14:41.312-04:00My son has an SDR 18 years ago...it was life chang...My son has an SDR 18 years ago...it was life changing!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-21699747737815214872016-10-31T22:13:53.510-04:002016-10-31T22:13:53.510-04:00My son is now 24. When he was a child we received...My son is now 24. When he was a child we received wonderful support from Mayo Clinic. As he got older, they were less interested in him. A year ago he had continuous headaches, dizziness and other life inhibiting symptoms. We felt very dismissed by Mayo Clinic and came home with no answers. After hours and hours of exhaustive research, we changed his diet and many of the symptoms resolved. I am a single mom with limited resources and felt very abandoned by the medical community that once embraced us.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-69757882059107974222014-09-10T11:21:13.838-04:002014-09-10T11:21:13.838-04:00Why has no one mentioned Selective Dorsal Rhizotom...Why has no one mentioned Selective Dorsal Rhizotomy? SDR was performed by Dr. Park at the St Louis Children's hospital this summer on my daughter who has spastic Diplegia and it has been nothing short of AMAZING! People fly from all over the world to be treated by him and he has been performing this modified SDR surgery for over 20 years and has done more than 2000 of these surgeries himself. I have personally seen kids in wheel chairs walk after this life changing surgery. He has also performed this surgery on adults with success. I found this doctor by CHANCE after being released by her neurologist stating that there was nothing else that could be done for her. Well, after searching for days, I kept finding this one name, Dr. Park. Not every person with CP will be accepted, but everyone should at least look into it as it does help some like my daughter. I still cannot believe how little information is shared within the CP community. But, when half of the patients in the hospital were foreigners when my daughter had her surgery, this tells me we have to change this in the US. Anonymoushttps://www.blogger.com/profile/18133327920838204445noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-47026104038914837142013-10-03T11:55:14.266-04:002013-10-03T11:55:14.266-04:00I think any "project" that demands money...I think any "project" that demands money up front is probably a sham or a scam. A research project shouldn't require that the participants pay to partake. They get underwritten by a university or a government grant if there's any "there" there. Sometimes we get so eager for a positive result that we want to believe that some magic elixir is making a difference when it really isn't. When you don't have a lot of spare income it's harder to afford the placebo effect. Felicianoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-80339909800203966772013-10-03T00:43:37.606-04:002013-10-03T00:43:37.606-04:00Until people make a big enough stink, nothing will...Until people make a big enough stink, nothing will change. Look at how AIDS research got done - enough pissed people made a big enough stink.<br />As a side tangent, biofeedback was looked at and found to be somewhat helpful for cp<br />as far back as the 1970s. Its a low cost non invasive therapy but it never got serious consideration from the med community. Yet, they are all about braces, surgery and drugs.<br />When I asked the PT why no one looks at biofeedback she just said 'well it won't cure cp.' I said 'well, surgery doesn't cure it either.' No answer. There are a few other similar things to biofeedback and who knows what else is already out there languishing in some lab....but until parents and also adults with cp make enough noise, not much will change.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-54112248100056178872013-10-02T23:33:11.404-04:002013-10-02T23:33:11.404-04:00Thank you so much for sharing this very important ...Thank you so much for sharing this very important information! Let's Cure CP is working diligently on funding Cerebral Palsy research and to raise awareness of other studies available for both Children and Adults with CP.<br /><br />We are holding regular webinars and our next one will be held Wednesday October 9th 2013 at Noon EST. <br /><br />Topic: Cerebral Palsy Genetic Research Collaborative Study for Adults & Children with Cerebral Palsy. <br /><br />Subscribe to our newsletter https://tinyletter.com/curecp to be invited to our upcoming webinar series! Please "Share" and make people aware. www.facebook.com/letscurecp<br /><br />Hosted by CureCP.org and Presented By: Michael Kruer, MD<br />Pediatric Neurologist and Principal Investigator, CP Genetic Research Collaboration<br /><br />Jeff Kitchens<br />National Development Director<br />Let's Cure CP <br />CureCP.org Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-53413445415191586672013-10-02T16:39:20.232-04:002013-10-02T16:39:20.232-04:00Thank you so much for bringing awareness to this i...Thank you so much for bringing awareness to this issue, Ellen! Shastahttps://www.blogger.com/profile/01013565031179610593noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-74076753815022492872013-10-02T15:26:10.688-04:002013-10-02T15:26:10.688-04:00I live in Orlando, FL and there is an awesome faci...I live in Orlando, FL and there is an awesome facility here called Conductive Education Center of Orlando (http://www.cecfl.org/) which works with kids with all types of motor disabilities. The methods that they use are brought from Hungary and the results are amazing. My son has low muscle tone and they worked with him for just one summer. Soon after the summer ended he began to walk. I would encourage all parents with kids with CP or any other motor disability to check out the website. Although you may not live in Florida they may be able to give you information regarding therapy available in your area.Lynn Ramdinnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-27249023580407698162013-10-02T11:51:29.380-04:002013-10-02T11:51:29.380-04:00Thank you so much for this article! As a mother o...Thank you so much for this article! As a mother of a daughter with CP (she had a stroke the week before she was born), I was discouraged to find out about the very limited funding and research for CP. The good news is that we live in a time where it IS POSSIBLE to find ways to prevent, treat, and cure CP. The new neuroplasticity and brain research is very encouraging. Thank you to Reaching for the Stars - www.reachingforthestars.org - for the advocacy work that they have done on behalf of children with CP!Anonymoushttps://www.blogger.com/profile/16807451992325497246noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-29156747295897661302013-10-02T10:26:09.671-04:002013-10-02T10:26:09.671-04:00Ellen, thank you for sharing this important inform...Ellen, thank you for sharing this important information, It's so critical that more of us are aware of these funding disparities and the lack of needed research for Cerebral Palsy - the most common motor disability in children impacting 17,000,000 people worldwide. Thank you also for sharing the advocacy work that we are doing at "Reaching for the Stars. A Foundation of Hope for Children with Cerebral Palsy." We would love more families to get involved, become informed and speak up. If we speak together with one voice, we can make all the difference! Cynthia Frisina, Executive Director, www.reachingforthestars.orgAnonymoushttps://www.blogger.com/profile/03914675136809106627noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-24635439307169958892013-10-02T10:25:53.471-04:002013-10-02T10:25:53.471-04:00Ellen, thank you for sharing this important inform...Ellen, thank you for sharing this important information, It's so critical that more of us are aware of these funding disparities and the lack of needed research for Cerebral Palsy - the most common motor disability in children impacting 17,000,000 people worldwide. Thank you also for sharing the advocacy work that we are doing at "Reaching for the Stars. A Foundation of Hope for Children with Cerebral Palsy." We would love more families to get involved, become informed and speak up. If we speak together with one voice, we can make all the difference! Cynthia Frisina, Executive Director, www.reachingforthestars.orgAnonymoushttps://www.blogger.com/profile/03914675136809106627noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-55188108673360435432013-10-02T10:22:20.782-04:002013-10-02T10:22:20.782-04:00Totally not surprised by your findings...I am a yo...Totally not surprised by your findings...I am a young entrepreneur whose nephew suffers from Cerebral Palsy. I have designed an exoskeleton that will help children walk, but at a price that families and clinics can afford. I would love to talk to you more on this topic. <br />I also encourage all the readers here to check out AlitusMedical.com. I am looking for support from the CP community. <br />Please email me at manmeet@alitusmedical.comAlitushttp://alitusmedical.comnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-26634595185686874782013-10-02T10:10:07.979-04:002013-10-02T10:10:07.979-04:00Thank you Ellen for bringing awareness to this ver...Thank you Ellen for bringing awareness to this very important issue. We need to advocate for our community! If we do not ask questions, raise awareness about the lack of funding, and mobilize as a community, things will not change.Anonymoushttps://www.blogger.com/profile/05270120577373351197noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-62730671720348539982013-10-02T10:09:07.664-04:002013-10-02T10:09:07.664-04:00Thank you so much for this post! I have a child on...Thank you so much for this post! I have a child on the autism spectrum and another child with CP, and I too have observed that the funding disparities are significant and inexplicable. <br /><br />I also very much appreciate the resources you've included.<br /><br />I have friends who have traveled to other countries for CP treatment and witnessed for myself how effective some of these treatments can be! The only thing holding us back here in the United States seems to be funding. We're just on the brink of medical history and life-changing advances...wouldn't it be nice to see our own children benefit!<br /><br />I'm grateful for organizations like Let's Cure CP (www.letscurecp.org) - and eye-opening articles like this one - that bring to light the exciting potential and very real treatment advances we could reap with some focus and funding. <br /><br />So thank you, and happy World CP Day to all! :)WhacamoleLifehttps://www.blogger.com/profile/03859531985217484640noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-71184674898573152382013-10-02T10:08:50.104-04:002013-10-02T10:08:50.104-04:00Just wait until they become adults - there is NOTH...Just wait until they become adults - there is NOTHING available for them, medically or otherwise!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-62801294530288020762013-10-02T10:01:47.447-04:002013-10-02T10:01:47.447-04:00I had no idea CP wasn't being researched much....I had no idea CP wasn't being researched much. I'd heard a few news stories about cooling babies and whatnot and, I guess, I just assumed. . . How frustrating.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-37890203884369285742013-10-02T09:44:51.451-04:002013-10-02T09:44:51.451-04:00It is truly AMAZING that there is so much autism r...It is truly AMAZING that there is so much autism research. One does not outweigh the other. This is not a competition! There can be lots and lots of research out there for <i>all</i> kinds of disabilities.Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-7933945487471914832013-10-02T09:25:41.996-04:002013-10-02T09:25:41.996-04:00Ugh. So much autism research. I really want someon...Ugh. So much autism research. I really want someone to focus on cerebral palsy because that affects people physically.Anonymoushttps://www.blogger.com/profile/10616282351291824392noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-51925449528620814402013-10-02T08:04:15.412-04:002013-10-02T08:04:15.412-04:00You're so right there isn't much research ...You're so right there isn't much research being done on Cerebral Palsy I hadn't noticed before. Nishahttp://nisha360.com/noreply@blogger.com