Helpful Links
VIDEO PRESENTATION DISCUSSING EXON 7
This video was produced by the Cold Spring Harbor Laboratory. This is the best video I've seen where it discusses exon 7, and how exon 7 impacts those who have SMA.
https://www.youtube.com/watch?v=YLluIVwg_y4&index=4&list=LLu6wTX2VsrOIgRP7xXcsAFA&t=0s
HYDROCEPHALUS AND NUSINERSEN UPDATE FROM BIOGEN
This was Biogen's statement regarding adding hydrocephalus as a possible side effect for Spinraza on the EU's warning label.
http://www.sma-europe.eu/news/biogeny-provides-information-on-upcoming-spinraza-eu-label/
CURE SMA FACEBOOK LIVE VIDEO
During the 2018 Annual Cure SMA Conference, Cure SMA held a Q&A session where a panel of researchers and a panel of doctors took the stage to discuss their respective pharmaceutical companies. They gave all of us updates regarding their latest trials and important information on their most recent findings. Cure SMA did a Facebook live video.
SMA NEWS TODAY
This website is an excellent example of how the Internet and social media can change our lives. This website is a place where we, as SMA patients, can go to not only answer questions from others who suffer from our disease, but we can also ask questions that we may need answers to was well. I invite all of my subscribers and followers to my YouTube channel to join this website and become actively involved with all of the different discussion forums.
CLINICAL TRIALS WEBSITE LINK TO CYTOKINETICS / ASTELLAS PHARMACEUTICAL'S TRIAL OF PK-2127107
This website will give detailed information on Cytokinetics / Ostrella Pharmaceutical's clinical trial of their drug PK-2127107
https://clinicaltrials.gov/ct2/show/NCT02644668?term=CK-2127107&rank=4
CURE SMA LINK TO THEIR ARTICLE ON THE CYTOKINETICS / ASTELLAS CLINICAL TRIAL
This information details the article written by Cure SMA on 1/4/16 regarding the clinical trial for Cytokinetics / Ostrella Pharmaceutical.
http://www.curesma.org/news/cytokinetics-enrollment-phase-2.html
WIKIPEDIA LINK DISCUSSING CYTOKINETICS / ASTELLAS
This article gives great information on Cytokinetics / Ostrella Pharmaceutical's clinical trial drug called PK-2127107.
https://en.wikipedia.org/wiki/Cytokinetics
CLINICAL TRIALS WEBSITE LINK TO NOVARTIS PHARMACEUTICAL'S TRIAL OF BRANAPLAM (LM1070)
This website will give detailed information on Novartis Pharmaceutical's clinical trial of their drug Branaplam (LM1070)
https://clinicaltrials.gov/ct2/show/NCT02268552?term=LMI070&rank=1
CURE SMA LINK TO DOCUMENTATION REGARDING NOVARTIS AND LM1070
This information details the article written by Cure SMA regarding Novartis and LM1070
http://www.curesma.org/news/updates-from-drug-programs.html?referrer=https://search.yahoo.com/
CURE SMA LINK TO THEIR ARTICLE ON THE NOVARTIS CLINICAL TRIAL
This information details the article written by Cure SMA on 6/3/15 regarding the clinical trial for Novartis Pharmaceutical.
http://www.curesma.org/news/novartis-phase-2-trial.html
WIKIPEDIA LINK DISCUSSING BRANAPLAM (LM1070)
This article gives great information on Novartis Pharmaceutical's clinical trial drug called Branaplam, also known as LM1070.
https://en.wikipedia.org/wiki/Branaplam
WIKIPEDIA DOCUMENT DISCUSSING NOVARTIS
This article gives some background information about Novartis Pharmaceutical.
https://en.wikipedia.org/wiki/Novartis
CURE SMA WEBSITE
This link will take you to the Cure SMA website where you can find some great information on SMA treatments and articles pertaining to SMA.
CLINICAL TRIALS WEBSITE
This website gives great information on current ongoing clinical trials for numerous diseases, including Spinal Muscular Atrophy.
https://www.clinicaltrials.gov/ct2/home
ROCHE PHARMACEUTICALS WEBSITE
This link will take you to Roche Pharmaceutical's website where you can find information on their pending SMA treatments.
PRESS RELEASE FROM AVEXIS
This is the press release AveXis issued regarding 2 of their current ongoing trials of their SMA treatment AVXS-101, and their 3 scheduled treatments coming in 2018 and 2019.
http://investors.avexis.com/phoenix.zhtml?c=254285&p=irol-newsArticle&ID=2326661
AVEXIS PHARMACEUTICAL
This link will take you to AveXis Pharmaceutical's website where you can find information on their SMA treatment known as AVXS-101.
EVERYONE'S ANCHOR (Written before Spinraza treatment was created)
Most authors write their book with the intention of telling a story. I've been in a wheelchair all of my life, and I wrote Everyone's Anchor to help encourage or indeed be privileged enough to perhaps teach (in sharing my life story), those with disabilities to focus on their abilities. In my book, I define handicaps as anchors. An anchor is something that everyone carries behind them, no matter who you are. As you read my book, you will learn my definition and categorization of Anchors into Four Sizes. These sizes are Small, Medium, Large and Transparent. My book is also written for those who believe that they have no handicaps. No matter who you are, everyone has a handicap that limits their abilities to a certain extent, and my book discusses how to manage these types of handicaps or anchors.
https://www.amazon.com/dp/1468174622/ref=cm_sw_su_dp
ABOUT SMA
This link will take you to the Muscular Dystrophy Association (MDA) website where they give great information about SMA.
https://www.mda.org/disease/spinal-muscular-atrophy
ABOUT SPINRAZA
This link will take you to the Food & Drug Administration (FDA) website where they discuss Spinraza and what this treatment is designed to do.
https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm534611.htm
BIOGEN
This link will take you to Biogen's website. Here, you'll not only see great information on SMA and Spinraza, you'll see other diseases they are working on to find innovative treatments to help those like us who are battling life changing diseases. NOTE: Once in Biogen's website, click on the Therapies tab to see all choices, including Spinraza.
SPINRAZA START FORM
This link will take you directly to the Spinraza Start Form on Biogen's website. The Start Form is on Page 4 of the PDF document. The other pages give great information about the Spinraza treatment.
https://www.spinraza-hcp.com/content/dam/commercial/specialty/spinraza/hcp/en_us/pdf/start-form.pdf
SPINAL CORD INFORMATION
This link will show an interactive view of the spinal cord and it gives detailed information for each segment of the spine and each individual vertebrae.
http://www.innerbody.com/image/skel05.html
INTELECT NMES DELUX UNIT
This link will take you to Pro Therapy Supplies web site and you can learn more about the NMES or neuromuscular electrical stimulation devise I purchased. NOTE: I am in no way promoting Pro Therapy Supplies and they are not endorsing my website. This is the unit I purchased because my physical therapist believes it will work for me.
https://www.protherapysupplies.com/Shop-by-Brand/Intelect/Intelect-NMES-Deluxe-Unit
THERA-BAND HAND EXERCISER BALL - EXTRA SOFT
This link will take you to Amazon's site where you can see the different therapy balls that are available to improve hand and finger strength. NOTE: I am in no way promoting these products. They work fine for me, but some people may find them to be a little too small for their hands.
- Yellow (Extra Soft): This is the one I purchased https://www.amazon.com/gp/product/B00066D6EK/ref=oh_aui_detailpage_o00_s00?ie=UTF8&psc=1
- Red (Soft): https://www.amazon.com/TheraBandHandExerciserSqueezeBall/dp/B0037J0TSO/ref=pd_sim_328_12_encoding=UTF8&pd_rd_i=B0037J0TSO&pd_rd_r=CA0XFY0PQZ4TTHYADN43&pd_rd_w=snS1h&pd_rd_wg=7WsGr&psc=1&refRID=CA0XFY0PQZ4TTHYADN43
- Green (Medium): https://www.amazon.com/BiofreezeExerciserStrengtheningIncreaseFlexibility/dp/B01A58F8OY/ref=pd_sim_328_3_encoding=UTF8&pd_rd_i=B01A58F8OY&pd_rd_r=CA0XFY0PQZ4TTHYADN43&pd_rd_w=snS1h&pd_rd_wg=7WsGr&psc=1&refRID=CA0XFY0PQZ4TTHYADN43&dpID=41DDUXGzt4L&preST=_SX342_QL70_&dpSrc=detail
- Blue (Firm): https://www.amazon.com/TheraBandHandExerciserSqueezeBall/dp/B00KDO477U/ref=pd_sim_328_4_encoding=UTF8&pd_rd_i=B00KDO477U&pd_rd_r=03EHXCQFDKWWKD63VG64&pd_rd_w=Bgs1f&pd_rd_wg=pYGV6&psc=1&refRID=03EHXCQFDKWWKD63VG64&dpID=41dolYoW0GL&preST=_SX342_QL70_&dpSrc=detail
- Black (Extra Firm): https://www.amazon.com/TheraBandHandExerciserSqueezeBlack/dp/B00KDO43YM/ref=pd_sim_328_2_encoding=UTF8&pd_rd_i=B00KDO43YM&pd_rd_r=03EHXCQFDKWWKD63VG64&pd_rd_w=Bgs1f&pd_rd_wg=pYGV6&psc=1&refRID=03EHXCQFDKWWKD63VG64&dpID=41JM1rXdMCL&preST=_SX342_QL70_&dpSrc=detail
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SMA TO A-OK PODCAST
This podcast deals with the topic of depression and anxiety. I did this podcast because I feel that this is a topic that many of us in the SMA community will have to deal with at some point in our life. This podcast explains my journey with depression, in my hopes and prayers are that it will help someone who’s listening to it.