Wednesday, September 19, 2012

Heavy Heart



It is with deep sorrow that we announce the untimely passing of Jennifer Jaff, Esq, Founder and Executive Director of Advocacy for Patients with Chronic Illness, Inc. Jennifer conceived of and founded Advocacy for Patients because of her extraordinary passion and commitment to ensuring equal rights for those living with chronic illness.  She dedicated her life and career to improving the quality of life for others based on her own experience with Crohn’s disease. 

Her advocacy on a personal level with individuals, in chronic illness arenas for larger disease populations, and in global forums for local and national health care reform was unparalleled in its sophistication, conviction, judiciousness, and honor. Jennifer believed fiercely that this cause was a civil rights issue, and her belief in the worth and rights of every individual with a chronic illness set precedents and models for equality nationwide.  Her goal to increase awareness of the need for and the power of advocacy for chronic illness touched all of us who knew her as well as the population at large. She always worked with amazing energy, grace, fortitude and resolve.

It was Jennifer’s aim to never refuse an opportunity to help someone in need and we know that there are many clients and companies with whom she was working at the time of her death. We appreciate the patience of our clients, friends and partners as the Advocacy for Patients staff works to contact those immediately affected by this tragic and unexpected loss and to develop plans for the future. 

We know that Jennifer will always be remembered for her dedication and the actions she took in the pursuit of justice for those with chronic illness.  Be assured that the Board of Directors and the Staff of Advocacy for Patients will do everything in our power to promote Jennifer’s great legacy.

We are informed by Jennifer’s family that any funeral arrangements will be private, but we are planning a memorial gathering for Jennifer in the next few months and we will announce the date, time and place once those details are final.  For those who want to donate gifts in her memory, please send them through our website, or by mail to Advocacy for Patients with Chronic Illness, Inc., 195 Farmington Avenue, Suite 306, Farmington, CT 06032.

Thank you.

Carol Fain Walters
President

47 comments:

  1. Others will express it better, but this is such a loss. Our thoughts go out to Jennifer's family and friends. The best thing that those who knew her or support her cause is to continue support the organization that she founded, the goals that it pursued and ideals that drove it.

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  2. My first thought was I was grateful that she didn't have to fight any longer...is this wrong? She was so very tired. I'll miss her so much. The world was a much better place because of her.

    She was my hero. I hope she can rest now.

    Kathy

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  3. On behalf of the Crohn's & Colitis Foundation, this is a terrible tragedy and a huge loss to IBD patients. Our thoughts go out to Jennifer's family. She will not be forgotten for her huge efforts on behalf of all living with Crohn's disease and ulcerative colitis.

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  4. I hope Jennifer's family are comforted in some small way by the love and loss being felt by those of us she stepped up to help. We will never be the same, and we will never forget.

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  5. As President of The Crohn’s & Colitis Foundation of America, I would like to express my deep sadness over the loss of our great friend, Jennifer. Through her advocacy and legal efforts, she helped so many Crohn’s, colitis and other chronically ill patients with such passion and kindness. We relied on her greatly and will truly miss her spirit and wisdom. Thank you Jennifer for all that you did for CCFA and patients everywhere.

    -Richard Geswell

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  6. I am so very sorry to hear this news. Jennifer was an inspiration to me and so many others. I hope she knew that her work helped so many people facing chronic disease.

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  7. This is a loss to the community indeed. Jennifer went out on a limb and helped me to get adequate compensation from my health insurance company way back when she was at the Attorney General's office. Without her work, parity and other laws might never have been successful.

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  8. My heart goes thud. This is a great, great loss. Thank you Jennifer for your tireless work on behalf of so, so many. I learned much from you. :(

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  9. I only recently reached out to Jennifer as a resource for clients in our practice with chronic illness. I'm very sorry to hear this news of such a great loss.

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  10. Rip Jennifer, you were a true hero...

    http://www.youtube.com/watch?v=5cdLSYjKpzA

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  11. Jennifer will be greatly missed. She was one of those rare and caring individuals who fought for what she believed in and brought help and hope for so many people. Her spirit will always live on as an inspiration to us.

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  12. Carol -

    This is Vicki Veltri, CT Healthcare Advocate. Please contact me directly at 860-297-3989 or victoria.veltri@ct.gov if you need assistance with current/ongoing health insurance appeals. We would like to assist you and the staff during this very difficult time. We often referred cases to each other. I'm sorry to make this offer via a comment, but I could not find a direct contact for you.

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  13. Although I never met you Jennifer Jaff, you inspired me on a regular basis. You had a beautiful spirit and helped so many people who were tossed to the side because of chronic illness. Thank you for all you have done. You will be missed by many and loved in our hearts forever! RIP

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  14. To wake today to the sad and distressing news of Jennifer's passing was a shock straight to my heart. Coming back from a day at the office where I could be found crying, or laughing, or sometimes both as I explained to those around me what a phenomenal woman Jennifer was and how honoured I was of her friendship and love - I find it profoundly difficult to post this message on the webpage that we built together "back in the day". Jennifer and her Advocacy for Patients site will be a fond memory of the passion and motivation one person could instil in others. I am insanely proud (sinfully so) of being the one who Jennifer choose to 'birth' this site for her and have been pleased with how it grew and unfolded in the years since I had to step away after reaching the limits of my talents in relation to site-builds. I've thanked her countless times for letting me be a part of this site, and for allowing me to help her as she's always helped others. Rest in peace, dear friend.

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  15. God bless this amazaing woman and all she did to help others. Today is truly a sad day especially for those of us suffering with UC/Crohns. God will certainly welcome her into the gates of heaven with Gold Angel Wings waiting :)

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  16. What happened??? If Jennifer was ill, why didn't she let us know? She helped so many of us with Crohn's Disease in so many ways - legally, personally, etc. I know a lot of people are shocked by the suddenness of Jennifer's passing. Was it Crohn's related? a heart attack? something else? Jennifer did so much good for so many of us. The world has lost a true angel warrior.

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  17. What a tremendous loss. I am stunned. She was a remarkable woman. My condolences to her family.

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  18. Yes, please, we need to know what happened! I am so sad and so shocked. Jennifer helped my daughter to get appropriate school accommodations. She was the first person to truly understand her situation. I miss her already.

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  19. We are deeply saddened by the loss of Jennifer Jaff. She was a pioneer in the field of advocacy for ostomy patients and she will be missed by all she touched. Our condolences go out to her family and friends.
    Thank you Jennifer for all you did for members of the United Ostomy Associations of America. Sincerely - UOAA Management Board of Directors

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  20. I am sure she will be sadly missed. I did not know her or her work until now. May I reach out to any Family and Friends who loved her.

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  21. This is so incredibly sad. Thank you, Jennifer, for fighting so hard for so many of us. I am forever in your debt for helping me get coverage for the medication saving my life. You were already an angel here on earth.

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  22. It is with such great sadness that I read this news. My family and I will miss Jennifer greatly. I admired and will continue to admire her so much. She was so capable, smart, dedicated, and caring. The world has lost a wonderful person. I got to know Jennifer when my son, who has crohn's disease, needed help getting a 504 plan initiated at his school. We were having a lot of trouble with the school, and she helped us get through it with such grace, understanding, humor, and wisdom. Sometimes, she would send me an email at 3 or 4am! I wrote back that I thought she should get some sleep, and that our problems were not that urgent. But she said she couldn't sleep anyway, so she might as well spend the time helping others. Please pass along to Jennifer's friends and family my condolences, and let them know that her life and work provided meaning to a lot of people.

    I will continue to support Advocacy for Patients with Chronic Illnesses, and hope the organization continues to grow and help others. Jennifer has left a meaningful legacy with this organization.

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    Replies
    1. Classic Jennifer! So many times I couldn't sleep so I'd email her about my case in the middle of the night...and get an immediate response. Amazing, wasn't she?

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  23. Jennifer has been an inspiration to me for so many years, as someone who also suffers with a chronic illness as well as a (former) lawyer. I always thought Jennifer was such a generous person to do what she did. It isn't easy to work when you chronically feel sick and she helped so many people. A true angel has left us. I'm very saddened by this news.

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  24. Jennifer, I read your summer post: "Have a great week-end. See ya Monday! Jennifer".

    See you Monday...until then.

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  25. A heavy heart is right.

    Jennifer touched me as she did many others, with her passion in her advocacy for us who suffer.

    Her descriptive posts here included very personal issues that she had to deal with, just like every one of us who have a Chronic Illness. She helped us to realize that we are not alone, and she was there to fight for us all.

    Jennifer fought the good fight. She is a winner, and will be welcomed into the next phase with very the love and selflessness that was hers alone.

    She is dearly missed.

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  26. Thank-you for being a advocate for those in need <3

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  27. RIP Jennifer! You were a true angel on earth and now you will have your wings for an enternity as you are welcomed into god's loving arms. I hope that now you realize just how special your time on earth was. You have left a legacy that will continue to have a positive influence on countless lives. I speak for many, when I say, Thank you for everything you did to help others but more importantly, thank you for being you! You had a way of always making people feel better in every way. I am sorry that we never found the time to meet up and have that dinner out as we frequently said we would. I know that when we meet again, you will be able to eat everything and anything you want without any pain or discomfort. I look forward to sharing a meal with you then. Until we meet on the otherside, please accept my apologizes for not telling you enough just how special you were! I will miss you and will always keep you close to my heart. RIP my friend

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  28. I was very sorry to hear this news. Jennifer was a tremendous resource for all people with various chronic diseases (I represent those with autoimmune type 1 diabetes), and her passing is such a loss to all of us. I can only hope her lasting legacy will be for others to pick up where she began in this effort. Thank you, Jennifer. Your contributions will be remembered by many of us.

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  29. It was a sad day indeed when I learned of Jennifer's passing. I have Crohn's disease, and was friends with her thru fb groups. The day I learned of her passing, I was leaving for Washington DC. I had the opportunity to go and meet with congressmen from my state as a patient advocate. She was in my thoughts as I told them my story, and why medical imaging tests are so important to all of us. While I am new to this, and certainly not a professional, she was my inspiration. And I will continue to advocate for us whenever I can. Thank you, Jennifer for all that you have done and stood for. You will be remembered and missed by many.

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  30. Jennifer was an amazing woman. She helped me fight an insurance appeal for an expensive infusion drug that helped me go from being bedridden and horribly sick, to walking and playing sports again. She offered this help without hesitation, no questions asked. I was floored that a total stranger would be willing to do that for me, but then I learned that Jennifer had been doing this type of work for thousands of other people for years. If you look up "fearless advocate" in the dictionary, there should be a picture of Jennifer.

    My condolences to her friends and family. I hope she can finally get some rest, although knowing her the little bit that I did, she is probably up in Heaven lobbying God for some extra help for the sick people down here on earth, and making sure all of the Angels get treated equally and fairly. She will be missed, but never forgotten.

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  31. http://www.facebook.com/events/441501172563109/

    Until we can gather at the memorial to come, may this bring you some peace in your sorrow, and love directly to Jennifer from your heart.

    The beautiful blogs, articles, boards, sites, and replies are amazing. So many speak of her service, her devotion and all of it is SO true. She was my hero for what she did/gave to the world. Mostly, and for so long, she was simply my dear friend. She didn't give herself much downtime to relax and even while talking "off duty", she'd be multi-tasking for Advocacy. Sometimes, rarely, she'd tell me that she and Emily Cat were all snuggled on the couch or in her room while we talked. She was all about Advocacy, but she was real too - and we'd span all subjects we felt like, or talk a lot about nothing at all, or deeply sharing our thoughts. It will be those times I miss most. And yes, it was a pleasure working in common areas of Mission or IBD work. Anytime she'd call upon me for something, I'd jump. I loved that my son and I could DJ her annual Hartford location for the Worldwide Advocacy gatherings each spring. 2012 was not in Hartford and I should have gone to New York for her.

    I will be Lighting Up for her on September 30th, and hope you can too.

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  32. Jennifer helped so many. She helped me on an appeal, but her help did not stop with me. She then went on to help four of my friends with appeals. I can not imagine how many life's she touched. She changed my life and I am saddened by her passing.

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  33. I went to high school with Jennifer way back in the 1970s. All I knew about her back then was she could play guitar really well, and she and I swapped a few ideas and showed each other a couple of tricks.
    In recent years when my wife came down ill with ulcerative colitis, I found out about Jennifer's advocacy. She sent my wife a free copy of her book and wished her all kinds of success and luck.
    Thanks, Jenny. My wife is healthy today and you were a huge help in making that happen. The Class of 1975 is really going to miss you.

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  34. I was SO Shocked and saddened to hear of my dear friend Jennifer's untimely passing......she called me afew weeks ago and was awaiting some information that I needed to send her regarding my son who also has a severe form of both Crohns and Celiac Diseases......as life happens....I did not get to forward the information .....she was so incredibly kind to want to intervene in an insurance issue for my son....and offered to write letters of appeals.....dear friend....Rest Easy....No More Pain....and Rest in Peace..... :with Shalom:) Mia

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  35. My heart is broken. My condolences to Jennifer's family and friends. I spoke with her a couple of times for help with my son's Cronh's issues. She was and will always be an inspiration and such a wonderful woman and role model. A true fighter and champion. The entire family of patients and their families with IBD suffer this loss. May she rest in peace. She is well now and in God's care.

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  36. When I read the email from Advocacy about Jennifer's passing, it stopped me in my tracks, literally. I reached out to Jennifer about a year ago for help with an insurance appeal. She didn't know me from Adam, but she answered me immediately and her guidance was invaluable. God only gives us so many angels here on earth, and she was one. She will not be forgotten.

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  37. I was shocked and very saddened to learn of Jennifer's death. I am a consumer journalist and came to know Jennifer through my reporting on health-care issues. She was always available, eager to help and set the record straight and more importantly, truly cared about the issues, especially the accessibility and affordability of health care.She was always my number one "go-to" person to see if an issue deserved further reporting. I am sorry she was in so much pain and discomfort and am even sorrier to know the world will no longer have her knowledge and empathy.

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  38. I was so disheartened to learn about the untimely death of Jennifer.

    Jennifer was an extraordinary human being. I had the privilege of knowing her through our organizations. She was not only a respected, dedicated, and outstanding advocate of patient rights, but a most giving and caring person and incredible friend.

    I hope that Jennifer's family and co-workers will find some comfort in knowing that she made an incredible difference in the lives of so many people.

    There will be a permanent void in my life without her, however, the spirit of her memory will live on in our hearts forever.

    On behalf of the Association of Gastrointestinal Motility Disorders, Inc. (AGMD), I wish to extend our deepest sympathy to her family, friends, and co-workers.

    Mary-Angela DeGrazia-DiTucci
    President/Patient/Founder
    Association of Gastrointestinal Motility Disorders, Inc. (AGMD)

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  39. What a wonderful person Jennifer was. I was so sad to see the NYT obit. Her absence is an incalculable loss.

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  40. We are very sorry to learn of Jennifer's passing. Jennifer was a very admirable and strong woman who helped so many people. We often referred IBD and IBS patients to her foundation. She was tireless in her efforts. We were very grateful for the incredible work she did.

    She will sadly be missed.

    Jeffrey Roberts
    Founder, IBS Self Help and Support Group
    Founder, IBD Support Group

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