You are using a browser that is either out of date or not supported.
HIBM.ORG is best viewed using Firefox, Safari, Opera, or IE 6+.
Thank you for your attention.

Crystal's Nomination Letter

The Jefferson was made possible by Crystal, Dr. Darvish's caring work colleague, because of her nomination letter. She has known Dr. Babak Darvish for more than 10 years and of those years she has been a direct witness to Dr. Darvish's progression. From 10 years ago, when he could walk to today nearly confined to a wheelchair, she has admired his positive light and his unrelenting quest to seek a cure.

Read Crystal's Words Below:

“He can make the most difficult patients turn around in their attitudes and thoughts as he role models hard work and the essence of quality of life. His arms are weak, he can hardly raise his arms to shake someone’s hand or open door knobs etc, but despite all of this, people around him do not see him as disabled, but as a leader. He inherited a very rare genetic disease that has only been really identified in the past 10-15 years. He and his brother had the ill fate of both getting this condition called HIBM (Hereditary Inclusion Body Myopathy)–it reeks havoc on the muscles and over time they become weak and wasted and leave persons disabled. When he and his brother first had symptoms (his brother is a doctor too), they and their doctors did not know what they had–they could not be diagnosed. So, being the whiz kids that they were, they set out to find out. They traveled to other countries to talk with doctors and people and helped diagnosed themselves. Because the condition was so poorly known, even amongst neurologists and physiatrists, he and his brother and his family founded a nonprofit organization in other to help others and with the ultimate goal of trying to find the cause/cure, etc. They set up an organization called ARM (Advancement of Research for Myopathies) www.hibm.org. Over the past years, they found research sites to work with and began research to help understand and with the hopes of eventually finding a cure for this condition. Their organization is now going on ten years of service and they will have their first human clinical trial this year that is planned this fall. He works endless hours outside his full time job at the VA at other facilities to work on this research. The first person will be a health care professional who has this condition to undergo a trial of gene therapy. His organization has raised more than 1 million dollars that has been given out for research within the community. He is an unsung hero for all that he does each and every day to get up, get dressed, get in his wheelchair, ride the wheelchair van to work and work more than 40 hrs per week with us and then go to other facilities after work and on weekends.

I have known him for approximately ten years as colleagues now. He is one of the most amazing doctors that I have ever met, and one of the most amazing human beings I have ever met. I love him like a brother and there are so many at our facility who love him so–I don't just mean respect, but LOVE him and this includes his patients and his coworkers. He is a brilliant, kind, gentle, compassionate man who brings a gift to this world. Let me tell you his story. Dr. Darvish is about 38 years old. When I first met him, he was able-bodied and walked with a slight limp. Over the years, I watched a disease progression that took him from walking to his current state of being confined to a wheelchair all day long. His muscles are weakening over the years and I watched him go from a limp, to the use of a cane, to the use of crutches, and then to the use of an electric wheelchair. The amazing thing is, he is still fully contributing to his work department, working not only his scheduled hours, but often staying hours late in his office–we laugh and joke because he is often almost late to catch his wheelchair van ride home in the evenings and we have to chase him out of his office. He has the greatest outlook on life, is optimistic, smiling, encouraging, and brings out the best in others. He is a vital team member, bringing to the table his brilliant (and i mean he is really brilliant) knowledge, his wisdom, his experience of disability, and his attitude of hope and belief that everyone has something to offer.

When he and his brother began exhibiting signs and symptoms of the disease process and their long journey to help find a diagnosis–together they were inspired to help others so they worked to create a research facility where they now reach out to persons all over the world. You can go to their website of www.hibm.org and see the information about this disease process.

He inspires us all on the rehab unit on a daily basis. He has a very supportive wife who adores him dearly and now they have a new son. I guarantee you that if you talk to this man by phone, email, or in person, that he will simply amaze you and make you a believer that there are such good people in the world. Dr. Darvish is such a wonderful person that it would be a great surprise and energy booster for him to say thank you for all he does at our facility and for all that he is doing in the community by being featured as a public hero!! “