Argus II Available for CHM Patients

What is the Argus II?

Argus2The Argus® II Retinal Prosthesis System (“Argus II”) is also known as the bionic eye or the retinal implant. It is intended to provide electrical stimulation of the retina to induce visual perception in blind individuals. It is indicated for use in patients with severe to profound retinitis pigmentosa and CHM is a subset disease of RP.
Argus II has been implanting devices in the U.S. since January 2014.

How does the Argus II work?

A miniature video camera housed in the patient’s glasses captures a scene. The video is sent to a small patient-worn computer (i.e., the video processing unit – VPU) where it is processed and transformed into instructions that are sent back to the glasses via a cable. These instructions are transmitted wirelessly to an antenna in the retinal implant. The signals are then sent to the electrode array, which emits small pulses of electricity. These pulses bypass the damaged photoreceptors and stimulate the retina’s remaining cells, which transmit the visual information along the optic nerve to the brain, creating the perception of patterns of light. Patients learn to interpret these visual patterns with their retinal implant.

More Information

In a recent telephone interview with Gary Peyser, Customer Service Manager at Second Sight Medical Products, Inc, Gary confirmed that an advanced CHM diagnosis would satisfy the inclusion criteria and allow patients to be considered for the ARGUS II. In addition to the Choroideremia diagnosis, the following principles would need to be established:

* Patient must be at least 25 years in age
* Level of vision must be very poor; bare light perception

Multiple medical centers around the country are able to perform the procedure. 80% of the cost would be covered by Medicare and the remaining balance covered by secondary insurance (however this would vary with an individual’s insurance coverage).

ARGUS II would work specifically with the eye which contains the least amount of sight left. The procedure would be under general anesthesia and take between 2-4 hours. The microchip would be applied so that the central line of vision, where the chip lies, would provide 22 degrees of vision – 11 degrees on each side, thus all other peripheral vision would be lost.

Each patient will have individual outcomes, however generally speaking images will be seen in black and white with shades of grey. Edges of buildings, doorways, curbs and crosswalk stripes can typically be seen. Gary stressed the need to continue to use adaptive equipment such as a guide dog or cane, but the ARGUS II can certainly provide increased awareness and safety. Facial images most likely would not be seen, however one should be able to discern figures.

CRF member, Dave Schmidt in Northfield, Minnesota has been given preliminary approval as a possible candidate to receive ARGUS II at the Mayo Hospital in Rochester, Minnesota. He will be meeting with physicians later in November with a hopeful procedure scheduled in early 2015.
Please keep in mind, ARGUS II is for advanced CHM patients. If you would like more information, please visit: http://2-sight.com .

Specific questions can be made of Mr. Gary Peyser at Second Sight. He will be able to provide information and if you meet necessary criteria, refer you to the appropriate medical institution in your area that is participating with Second Sight & the ARGUS II.
Gary can be reached at (855)756-3703.

EJ Scott Wins Envision Award and $5000 for Choroideremia Research

On Saturday night, October 25th, EJ Scott took the stage in front of approximately 400 attendees of the annual Envision Gala event in Wichita, Kansas. EJ had been invited to the event to accept an award for his work bringing attention and awareness to the public about the blind community. In addition to the award the group is donating $5,000 to the Choroideremia Research Foundation. The Event this year was an “Arabian Nights” theme with over the top decorations, including a camel! Envision, is a non profit organization that assists individuals and their families that are blind and visually impaired. They train the individuals to be independent and self sufficient with different programs using state of the art adaptive technology. They also help to place them into the job market. There are also counselors and Ophthalmologists on staff. This year at their annual fundraiser in Wichita, they presented a new category for their awards. The new category was for a person who has brought attention to the blind community and they chose EJ Scott. EJ raised a great deal of money and brought attention to Choroideremia when he ran12 marathons in 12 months in 2012, while running blind folded. The award was presented to EJ by Bill Roy the emcee for the evening, a prominent newspaper writer, editor and TV award winning reporter. Ed & Marion Scott flew in to attend the event and watch as EJ brought the crowd to a roaring laughter from behind the microphone. Congratulations EJ on a well deserved award, for your continuing work and efforts to wipe out Choroideremia!

First Marathon Down – 3 to go for Jeff Benelli

At 7:05 am in the morning on Saturday October 18 – the start gun fired and Jeff Benelli was off on his first of 4 marathon’s in 5 weeks all to raise funds to help cure Choroideremia.  Snapshot (10-19-2014 7-28 PM)The Kansas City Marathon began before first light, making the first few miles especially difficult for Jeff as he started running in the dark.  Keeping his hands out in front of him to help make space in order to avoid running into other marathoners, required added effort on top of the monumental challenge of taking on 26.2 miles of running.  Once the sun came up some of this stress eased, but due to Jeff’s significantly reduced visual field he needed to stay “on alert” throughout the entire race.  Normally on a long run an athlete will be able to “turn off” some of their thinking and mental focus as they enter “the zone” where their body takes over, allowing the racer to put miles behind them through a significant part of the event.  Unfortuneately Jeff did not have this luxury, throughout the entire race he needed to be intensely focused both physically and mentally in order to avoid bumping into athletes around him.  This added strain forced him into a pace slightly below his goal pace after mile 13 of the event.  But throughout the entire race Jeff laid it all on the line, and gave everything that he had.  When he crossed the finish line, fighting cramps in his hamstrings and mental exhaustion – Jeff had placed 18th in his Division (of more than 70 racers), and in the top 20% of racers overall in the Marathon!  His final time for the Kansas City Marathon was a BLAZING FAST 3:48!

Support Jeff’s race to end blindness by clicking here to make a donation in support of his incredible 4 marathons in 5 weeks!

 

Baseball Stars swing for a cure

Markie and the rest of the Devoe family have teamed up with the Philadelphia Phillies Triple A baseball team – the Lehigh Valley IronPigs – to help raise awareness and funds for Choroideremia Research.  IronPigsMany of the team’s Star players like Tyler Henson and Jim Murphy have become friends with the Devoes and have been featured in articles helping to tell Markie’s story and have also jumped in to help with fundraisers – like one held at Home Plate Dairy in August.

Check out this great article in The Morning Call about Markie and the Iron Pigs

and

This article on Lehigh Valley Live

Alan’s Inspiring Journey raising over $5,000 and becoming a 1/2 Marathoner finisher

05The following is Alan’s Trowhill’s Journey from Non-Runner and newbie fundraiser to becoming a 1/2 Marathon Finisher and fundraising champion, in his own words.  Included in the story are photos from his recent 1/2 Marathon – Congratulations Alan on your incredible performance!

It all started back in May as an idea and soon became a mission.

I returned home from a nine (9) month tour in Afghanistan on March 18th where I had started exercising regularly on an elliptical, but had never run on the road in my life. After returning home, I stopped exercising for two (2) months, then finally decided enough was enough and I began running… on the road with no real goal.

I heard about EJ Scott running 12 Marathons in 12 Months, but I never got the chance to hear his story until June 16th and the CHM conference in Denver. I had never met a person with CHM, other than my brother Curt, until June 15th. I had never heard anyone else’s story before travelling to Denver and it was awe inspiring to see so many people connected by one single purpose, to Cure CHM.

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the Bruckelaufe Half Marathon crosses 13 bridges in 13.1 miles

On June 29th, my genetic test results came back and confirmed what I already suspected; I have Choroideremia (CHM). This news coupled with the knowledge I gained at the CHM conference in Denver motivated me to set a goal; I was going to run a Half Marathon “This Year!”

I contacted Danny Boren and Cory MacDonald about setting up a fundraising page and before the officially “new” CHM website was up and running, my beta page was ready to go.

I was going to start running on July 19th, but I had started training in May, so I joined a local 5K race on the 4th of July, I wasn’t fast, but I set a good pace and finished in 33:18 Minutes.

I then joined some amazing CHM family members in Hartford, CT on July 19th and we “Ran for Dan because he’s the Man.” It was my first ever color run and we all had a great time!

Next up was an 8K trail run for Multiple Sclerosis on July 26th. This was my first trail run and held special meaning to me because I have at least three (3) wonderful people in my life who have this terrible disease. I finished the race at 60:08 Minutes.

I then stepped it up to a 10K in Reston, VA on August 24th, it was a great race and I finished at 69:26 Minutes.

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Alan’s Wife, Kids, Mom & Dad all braved the 40 degree weather to cheer him on!

I started having issues with my knees in Mid-August, but with physical therapy, I was able to continue training and prepare for my Half Marathon.

Outside circumstance made me push my Half Marathon up from November 8th to October 4th in Frankenmuth, MI. The weather forecast was 40-45 degree and 50% chance of rain, but with a lot of luck, that reduced to 0% chance of rain. It was a grind and probably the most athletic thing I’ve ever been able to do, but I was able to complete the race in 2 Hours and 39 Minutes.

Thanks to my amazing friends and family, I was able to raise $5,000 for the Choroideremia Research Foundation (CRF). A special thanks to all of the CHMers who inspired me, especially Curt Trowhill, EJ Scott, Danny Boren, Cory MacDonald, Jeff Benelli and so many others, I couldn’t have done it without you!

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Celebrating with a well deserved beer post 1/2 Marathon

For anyone who thinks they cannot help the CRF, please use my story as motivation. I’ve never run before and never raised money before, but I was able to run a 13.1 mile race and raise over $5,000. If I can do it, I know you can too!

Please set up a fundraising page on CureCHM.org and email your friends or post on Facebook and Twitter, they want to help; all they need is a little motivation from you!