The Choroideremia Research Foundation Inc. is an international, non-profit organization dedicated to raising funds to find a treatment or cure for Choroideremia, a rare inherited retinal degenerative disease that causes blindness.

Meet Chris Moen, MD

CRF Editor — Wed, 09 May 2012 15:01:44 +0000

Dr. Chris Moen is a 34 year old CHMer from Wilmington, DE. He was diagnosed at around the age of 2. He’s married to his wife Alis and they have three adorable boys, Max, Ethan & James. Dr. Chris works as an Emergency Room Physician in Wilmington, is a Vice President of the CRF and Chairs the Scientific Advisory Committee. He is an avid fan of all Philadelphia sports teams, likes to do whatever he can for home improvements, enjoys music and spending time with his kids. He was nice enough to sit down with us for a little Q&A.

How has CHM personally affected you?

Chris Moen: It’s a day to day battle and I’ve had to make adjustments, such as giving up driving, which makes things more complicated. I know that I will eventually have to make some choices regarding my career as well. On the other hand, it’s also opened many doors for me, such as funding for my schooling and being able to work with Dr. Bennett as a teen. It’s also improved relations with my extended family members, some of whom I would not be as close to if not for the shared bond of having CHM.

What adjustments have you made in your life while dealing with CHM?

CM: I’ve arranged for rides to and from work and learning to rely on other people for help when needed. I’ve found that I can use the internet for many things I need to do.

Do you use any adaptive technologies or aids?

CM: At this point, I use a flashlight when needed.

What advice can you give other CHMers?

CM: Two things. First, live your life. Do the things you want to do, see the things you want to see. Be aware of CHM and its pitfalls, but don’t let it stop you from achieving your goals. Learn to put away your pride and ask for help from others when you need it. It’s not easy to do, but you will find it makes life easier. Second, develop a support system of family, friends, your local community withing various local and national blindness organizations such as the CRF. This will expose you to the various tools you will need to help you adjust to having CHM in your life.

How do you feel about the current track of CHM research?

CM: It leaves me a speechless. In just a few short years, we’ve gone from supporting basic R&D projects to being on the verge of an actual therapy. The CRF has gone from struggling to raise money to support one research project to funding 4 different research projects at this time. I’m ecstatic and really excited for our future.

Have you held or participated in any CHM fundraisers?

CM: By the time you read this, my wife and I will have hosted our 3rd “Cure In Sight” Wine Tasting. The previous two were quite successful and we’re hoping this years event tops the previous ones. I also participated in the first-ever 5k Trail Run for the CRF last September. (Note: Over $24,000 was raised at this year’s event!)

Any last thoughts?

CM: For CHMers, our families, friends and supporters, we’ve had nothing positive to look forward to… Until recently. A lot is going to happen over the next few years, so be sure to get more involved, educate yourselves and become as active as you can as we pursue our goals.

Meet Jeff Benelli

CRF Editor — Wed, 09 May 2012 14:42:22 +0000

Jeff Benelli is a 46 year old CHMer from the Kansas City area, diagnosed back in 1994. He is married and a father of two sons who are his main hobby, as well as a lifelong interest in staying physically fit. Jeff works as an Actuarial Analyst for Swiss Re and serves on the CRF Board of Directors. We sat him down and asked him a few questions.

How has CHM affected you?

Jeff Benelli: CHM has not caused me death, but has taken the life I knew and loved away from me.

What adjustments have you had to make?

JB: I started working from home. I’ve learned to move slower and tend to shuffle my feet a lot.

Do you use any adaptive technologies or aids?

JB: Outside of using a cane and flashlight, I haven’t really explored any other adaptive technologies or aids at this point.

How do you feel about the current CHM research?

JB: You have to think of our goals, and one of them is to stop the progression… What is going on right now is thrilling!

Have you held or participated in any CRF fundraising events?

JB: I ran six marathons in five years, placing in the upper rankings for my age group. My company holds an annual Corporate Jeans Day in my honor. I have conducted letter writing campaigns to support my marathon runs and I’ve told friends and family that the best gift they can give me for my Birthday or Christmas is to make a donation to the CRF. (Editor’s Note: Over the last two years, Jeff has raised almost $40,000!)

What advice can you give to your fellow CHMers?

JB: The biggest is to realize that as a CHMer or someone who is connected to a CHMer, there is no “they”, there is only “us”. No “they” is going to do anything for “us”, we must do it ourselves. Be a part of “us” so we can fix this. It will make you feel better about living with CHM and push us towards the cure quicker.

Any last words?

JB: My sincere gratitude goes to everyone who has supported the CRF, big or small, and I hope you continue to support us as we move forward towards our goal.

Conference Sponsorship

CRF Editor — Tue, 14 Feb 2012 13:56:01 +0000

The Choroideremia Research Foundation, Inc. International Conference is in 33 days !

Sixth International CRF Conference Sponsorship

IMPORTANT NOTE! The cutoff date for Conference Registration and booking your hotel room is May 1st! Be sure to make your plans now to join us at the CRF Conference in Boston, June 21-24!

You are invited to become an official sponsor for our CRF Conference in Boston.

Sponsors will have their names placed in the program and on a banner at the conference. All names will be listed in alphabetical order. A sponsor may choose to be listed as anonymous. The name Anonymous will represent all sponsors who choose this option.
A sponsor may also make a gift in honor of or in memory of a loved one or a friend. Membership in the CRF is not a requirement for sponsors.

Corporate or business sponsorships are also welcome. This is a very good way to let those attending the conference know of your business services and may encourage our members to use your business in the future.

Sponsorships begin at the $250 level and may go up to $1,000 for the support of a break between sessions or $5,000 for the sponsorship of the dinner on Saturday night. All sponsors except for breaks and the Saturday night meal will be recognized at the welcome session on Friday morning. A poster will announce the sponsor of a break and a card for each table will recognize the sponsor of the Saturday night meal.

All sponsorship proceeds will go to help underwrite the conference expenses so more CRF funds may go to research. For more information, please contact Cory MacDonald at (413) 781-2274 or click here to download a Sponsorship Form.

Home

Conference Registration

Boston Attractions

Conference Agenda

Making Travel Plans

Booking Your Hotel Room

Sponsorship Opportunities

Dr. Seabra to develop Replacement Therapy

CRF Editor — Mon, 06 Feb 2012 16:06:07 +0000

The CRF is honored to announce a grant to Dr. Miguel Seabra. Dr. Seabra will be working with a team at the University of Lisbon to develop a stem cell replacement therapy for CHM. These stem cells will be derived from a CHMers own skin cells and directed to become cells that make up the retina. This type of therapy has the potential to replace those cells that are lost due to the deteriorating effects of CHM.

Online Support Groups

CRF Editor — Mon, 17 Oct 2011 20:47:22 +0000

While dealing with Choroideremia, the ability to meet, share experiences and learn from others who are going through the same issues can be one of the most important aids in dealing with CHM. There are two, free, online email support groups that many members use daily to help each other in the day-to-day difficulties of dealing with CHM. For many, these email support groups have become a lifeline, and their fellow list members have become a part of their extended family.

If you have Choroideremia or have a child, spouse or friend who is affected by CHM, these support groups can help you deal with the various issues you face. To subscribe to the general list, send an email to:

choroideremia-subscribe@yahoogroups.com

A second email group is comprised of wives of affected men who may participate with the group mentioned above. This list is called the CHM Blind Wives Club. On this list, wives of affected CHM males discuss (privately) their personal and unique issues in being married to a CHMer. To subscribe to this wives-only list send an email to:

CHMBlindWivesClub-subscribe@yahoogroups.com

CRF Available in Multiple Languages

CRF Editor — Mon, 17 Oct 2011 15:58:48 +0000

As part of our effort to become more connected with our friends for whom English is not their first language, we are Beta testing using the Google Translate Function. Just click here and then choose your desired language from the “Translate to:” drop-down box and then click the “Translate” button. Please send any feedback about this multilingual function to info@choroideremia.org.

Presentation Materials

CRF Editor — Mon, 17 Oct 2011 13:55:23 +0000

The CRF has developed a brief trifold and a full brochure for use in learning about the CRF and sharing our story with others.

Click here for the trifold brochure in PDF.

Click here for the full presentation package in PDF.

Requires Acrobat Reader. Click here to download a free version if you do not already have Acrobat installed on your system or device.

CRF Public Service Announcements for Radio Distribution

We now have four, 15 second PSA’s in mp3 format, ready to be distributed to your local radio stations. These stations are required to play Public Service Announcements (PSA’s) every hour. Click here here to download these files and ask your local radio stations to help spread the word about the CRF!

Doctors with Vision

CRF Editor — Sun, 16 Oct 2011 15:29:20 +0000

Ian Macdonald, MD, CM, FCCMG, FRCSC, FCAHS

University of Alberta, Professor and Chair, Chief of Ophthalmology, AHS

Dr. MacDonald has worked in choroideremia (CHM) research for over 20 years. He identified the CHM gene and mechanism of disorder and developed the genetic test for CHM. He is currently engaged in pre-clinical work leading to human trials for gene replacement therapy for CHM. Dr. MacDonald serves on the CRF Board of Directors and receives funding from CRF Canada.

Dr. Miguel Seabra, MD, PhD

Professor and head of the Molecular and Cellular Medicine Section, Imperial College of London

Dr. Seabra developed the CHM mouse model and continues his work to develop an effective viral vehicle for treatment in mice. Supported by funding from the CRF and Fight for Sight, he is working toward clinical trials for gene therapy for CHM in humans.

Jean Bennett, MD, PhD

F.M. Kirby Professor of Ophthalmology, Stellar Chance Labs, University of Pennsylvania

Dr, Bennett is continuing her work for Phase III trials to follow up on her successful phase I/II trials for gene therapy for Leber Congenital Amaurosis (LCA), a disorder similar to CHM. With Funding from the CRF, she has completed in-vitro studies for gene therapy for CHM and is proceeding with small-animal studies using Dr. Seabra’s mouse model. If everything goes well, she expects to begin phase I/II human trials for gene therapy for CHM within the next year or two.

Albert Maguire, MD

Associate Professor of Ophthalmology at the Hospital of the University of Pennsylvania and the Presbyterian Medical Center of Philadelphia

Dr. Maguire worked closely with Dr. Bennett in the successful LCA trials. He is a member of both the University of Pennsylvania Institute for Translational Medicine and Therapeutics and the Center for Cellular and Molecular Therapeutics at The Children’s Hospital of Philadelphia.

Robert MacLaren, MD, PhD

Professor of Ophthalmology at the University of Oxford, Honorary Consultant Vitreoretinal Surgeon at Moorfields Eye Hospital

Dr. MacLaren’s research focuses on developing new treatments, particularly using gene therapy or stem cells, for patients with retinal diseases that cause blindness. His clinical research specializes in the genetics of retinal diseases and new techniques in retinal surgery, linking translational laboratory work to clinical trials. Dr. MacLaren is currently recruiting patients for a Phase I clinical trial at Moorfields Eye Hospital in London which is expected to begin in 2011.

Dr. Michael J. Young, Ph D

Associate Scientist de Gunzburg Director of the Retinal Transplantation Research Center
Assistant Professor, Harvard Medical School

Dr. Young’s current research projects involve bioengineering and stem cells to treat optic neuropathy, differentiation of retinal progenitor cells into specific cell types, and repair of the diseased retina: cell rescue and transplantation. Working in conjunction with other researchers, Dr. Young’s work offers great promise that in the future not only will the progression of diseases such as CHM be halted, but there will be actual restoration of lost vision. Click here for a transcript of Dr. Young’s comments at the CRF convention in July 2010.

Board of Directors

CRF Editor — Sun, 16 Oct 2011 14:43:08 +0000

Executive Director, Ty Herring, CFRE – ty@choroideremia.org Tel (254) 717-6617

Board of Directors

The 2011 – 2012 Board of Directors of the CRF:

Executive Board

President – Beth Foss – Minnesota
1st Vice President – Chris Moen, MD – Delaware
2nd Vice President – Janet Rowley – Maine
Treasurer – Lin Ogg – Texas
Secretary – John Oster – New York
Operations – Cory MacDonald – Massachusetts

Directors

Jeff Benelli – Overland Park – Kansas
Danny Boren – Kula, Hawaii
Garry Dean – Tuncurry, Australia
Thomas Driscoll – Swampscott, Massachusetts
H. Eric Hartman – New Orleans, Louisiana
Ian MacDonald, MD PhD – Alberta, Canada
Lorie Mayer – Brookfield, Illinois
Marion Scott – Melville, NY
Nick Tuftnell – Bristol, United Kingdom
Lisa Volker – Cincinnati, Ohio
Derry Walsh – Cork, Ireland
Randy Wheelock – Johnson City, TN

International Contacts

CRF Editor — Sun, 16 Oct 2011 14:42:37 +0000

Australia, Garry Dean – gdean@exemail.com.au

United Kingdom, Emma Salisbury – esalisbury@graphitecapital.com

France, Benoit Gres – benoitgres@free.fr

Canada, Robert Hillier – roberthillier@rogers.com