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October 20, 2010

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October 20, 2010

I donated very little but I've watched and witnessed what an amazing woman Jennifer Jaff is with her organization, fighting for people who can't fight for themselves. Jennifer, herself who has this painful disease, knows what it feels to be discriminated, ignored, etc while battling this disease and not getting support from people they loved because they don't understand the disease that overtakes this person's life. She listens, consults, advices, and supports...more importantly, readily to fight for them. She cares about every person she comes in contact with and treats them like any human being should be treated - unconditional love with no strings attached. She makes the person feel a person, not a disabled person.

The Great!

I've personally experienced the results of this organization in...

I've had personal support and advices from Jennifer and she's always there to listen, even when I needed to vent. She has helped me getting information on medical insurances when husband was laid off. I have also benefited from her sharing information daily she posts on behalf of her organization.

Ways to make it better...

If I had to make changes to this organization, I would...

I would want to see them having sufficient funds to start a committee focused primarily on donations/fundraising so that Jennifer Jaff and her staff can focus on what they love the most - their clients/patients.

More feedback...

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

What specific problem, purpose, priority, or project prompted your gift?

They need all the help they can use in order to help people.

Why did you make your donation at this time?

They really need the money to keep their organization in operation and it's still not enough.

What would you tell others about this organization?

I would them that it's an amazing organization that would go very far to fight for them, at little or no cost if they cannot afford. And they would be treated with respect right from the beginning.

When was your last experience with this nonprofit?

2010

October 19, 2010
1 person found this review helpful

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October 19, 2010
1 person found this review helpful

Jennifer Jaff is an attorney and helps thousands of chronically ill folks to resolve issues with their health insurers each year. She enables many, many people to receive life-saving treatments and prescriptions that have been denied. She does it all at no cost to the people she helps. My wife and I have donated to Advocacy for Patient with Chronic Illness and will continue to do that. As a person who has several chronic illnesses and who became unexpected disabled after working for thirty years as a science and medical librarian, I know what type of expertise this takes. Jennifer manages this organization out of her home with one other staff member and herself. I can't think of any other organization that does so much good with so little staffing. Any donation will be well used and benefit those who need it most.

The Great!

I've personally experienced the results of this organization in...

Jennifer writes a very informative blog that keeps people informed of aspects of health reform and also gives people ideas for dealing with hard insurance situations. The blog also creates awareness of the type of work she does for patients and self-help publications she's written. An excellent one among many is: Know your rights: A handbook for patients with chronic illness. 2008 It reviews medical and disability insurance and contains many useful form letters. I wish I knew this when I became ill.

Ways to make it better...

If I had to make changes to this organization, I would...

Jennifer offers an essential and hard to find service for those facing chronic illness and huge medical unknowns. She does this all with very minimal staff. I think she needs funding for at least a couple of high level support staff such as trained paralegal staff. Adequate staffing would lead to more people being helped. It would also allow Jennifer to concentrate more on difficult cases and perhaps more on fundraising.

More feedback...

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

What specific problem, purpose, priority, or project prompted your gift?

I am a person who became very ill and then disabled quite rapidly. I never knew what it would be like to live this way and be so dependent on medical specialists and very expensive medications. One of my life saving medications, Xolair, helps me to breath with severe, persistent asthma. It costs $36,000 per year. My antidepressant Cymbalta, costs about $6,000 per year. It is so expensive to be sick. Many people, almost, 50 million people here in the United States do not have the excellent health insurance I have. They need help in finding physicians and clinics who will help them and in obtaining medications. They also need help in fighting their health insurance company's denials of treatment and cancellation of their coverage. Jennifer helps children and adults with chronic illness needing help. I can't think of a more worthwhile purpose. Jennifer helps chronically ill folks to get the medical care they need.

Why did you make your donation at this time?

I saw the kind of good advice Jennifer was giving people on her blog. She was patient and she was extremely helpful. I wanted to help in that effort. I could also see the kind of excellent advice she was giving in her guide to patients and their rights as someone with chronic illnesses.

What would you tell others about this organization?

Jennifer makes your donation count and works endless hours to help people. She operates this organization out of her home which enables each hour to count and keeps costs down. By not commuting to an office some where else she also cuts down on time waiting in traffic. This is an added gift. Mostly I just like the way she tells it as it is. She was just great in the way she wrote a whole series of articles about how health insurance reform benefits us as patients. Donate generously and give your time to Jennifer too if you can. The band Pearl Jam also is a supporter. For example they do benefit concerts for her. I am attaching a photograph of me using my Flexitouch machine. It would cost an individual about $10,000 and simulates the drainage massages that many lymphedema patients need. I am lucky and have excellent insurance which pays for durable pieces of equipment like this which helps to control my leg swelling. Many people have no insurance or have insurance that is not as good as mine. To write the letters to gain insurance support, many patients would need the help of advocates like Jennifer. Without it, many cancer patients with severe lymphedema would not have the help of a machine like this. Others could not afford such a machine. Jennifer helps them.

When was your last experience with this nonprofit?

2010

October 19, 2010

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October 19, 2010

Advocacy for Patients with Chronic Illness, Inc is a wonderful organization run by a wonderful woman. JenniferJaff is a tireless and self-sacrificing person; a true mensch. I have a number of chronic illnesses and sometimes it can be overwhelming. However, I always know I can count on Jennifer for help, advice or just an ear when I need to vent. Trust me, I've done that many times. When you're chronically ill, sometimes it's hard for those who aren't to really get what you're going through. Advocacy does. It's great to have them in our corner. I've gladly recommended them to others.

The Great!

I've personally experienced the results of this organization in...

every dealing I've had with them. I've always received compassion and empathy and the advice I needed.

Ways to make it better...

If I had to make changes to this organization, I would...

find someone with the heart to increase the funding for this vitally-needed organization.

More feedback...

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

How did you find this group?

found Advocacy through their involvement with Lybba.

When was your last experience with this nonprofit?

2010

October 13, 2010

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October 13, 2010

Advocacy for Patients with Chronic Illness appealed my denial of disability retirement from the federal government and won. It wasn't just that. Jennifer Jaff made me feel like I wasn't a freak. Previously I'd worked for the IRS for nearly a decade. During that time I was a damned good employee, winning service awards, being relied upon by my managers to coach new employees, acting for my managers...I was a "golden child" until I got sick. Once I got sick, I was yesterday's trash. It hurt to be tossed aside. But Jennifer made me feel valuable. She made me feel like I deserved my disability retirement. She worked with me in writing the appeal. She made me feel human. I couldn't even begin to tell you how much that means to me. Winning the appeal was important; but feeling like I deserved it...Jennifer is an amazing person and her organization does amazing things!

The Great!

I've personally experienced the results of this organization in...

After being denied disability retirement in my initial application from the federal government I decided to use a lawyer. But the federal government is a weird system and fibromyalgia is a weird disorder and the lawyers I talked to were reluctant to deal with me. Jennifer Jaff stepped in and worked with to me to write an awesome appeal that was approved. It absolutely wouldn't have happened without her.

Ways to make it better...

If I had to make changes to this organization, I would...

Fighting for sick people is what Jennifer Jaff does best. If I were to make a change to the organization I would find a way to secure funding fo this organization so Jennifer can do what she does best. I think finding someone that can showcase what she does to the people who provide the funds for what she does would be awesome. That and moving the organization out of her house so she can rest....that would be a good thing. Jennifer inspires loyalty in the people that she helps. Wish we could help her!

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

How did you find this group?

Jennifer was some kind of advisor for Revolution Health. They pulled the funding from that, but Jennifer stayed on. I asked her a few questions about various lawyers I was dealing with and she asked me "why don't you try me? I'm free." and I did. And she was worth far more than I could have paid for!

What, if any, change in your life has this group encouraged?

Feeling like I'm valuable. Like I deserved what I was fighting for.

When was your last experience with this nonprofit?

2010

October 7, 2010

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October 7, 2010

As a medical social worker at a large institution working with pediatric chronic illness, I regularly refer patients and families here for guidance and advocacy support on issues ranging from educational equity access to necessary medications for well-being, employment discrimination issues, and entitlement and legal rights. I have seen, first hand, the way that the organizations dedication, investment wisdom and compassion have directly led to successful outcomes that allow children to have access to their educational curriculums, obtain life-saving treatments that insurances initially deny, and permit parents to not have to choose between threats of losing a job and being with their child during scary hospitalizations. I have seen families lies be enhanced, health be improved and most critically, perhaps, hope be restored, all because of the tireless work and expertise offered by this organization. As a professional collaborator, the services are prompt, relevant and exhaustive. I have seen the extraordinary impact the organization and Ms. Jaff have on public policy awareness and education the community about evolving laws impacting patients’ rights, and the reach she has in various illness-focused professional organizations to be a consultant to health care providers on the front lines, so that their own care delivery can be enhanced with the right strategies for patient advocacy. The organization and it’s commitment to equality helps teach me how to be a better clinician. It gives a 5-year-old with a lifelong chronic illness, a chance to be a 5 year old.

The Great!

I've personally experienced the results of this organization in...

successful outcome in medical treatment appeals and overturned denials, successful implementation of 504 school accomodation plans, larger scale awareness and timely education of health care providers on relavant laws affecting our patients.

More feedback...

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

October 7, 2010

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October 7, 2010

This organization provides vital services and information that put simply, would not be accessible to it's target population. I have referred many friends and have never know anyone to be disappointed with the level of attention or speed in response. It is a totally unique organization with tremendous heart and soul. Truly a comfort to know I have Advocacy for Patients to turn to if need be.

The Great!

I've personally experienced the results of this organization in...

I am diagnosed with multiple disabilities and have sought legal advice in a number of challenging situations. I count on APCI's newsletters and social media to provide current information specific to disabled Americans including health care policy.

More feedback...

How frequently have you been involved with the organization?

About once a year

When was your last experience with this nonprofit?

2010

October 7, 2010

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October 7, 2010

I was diagnosed with Crohn's disease in 2001 at the age of 38. After a constant battle, several surgeries, 18 blood transfusions, and more medications than I can remember. I’ve experienced events that will haunt me forever. My disease has taken my life hostage, twisted it, making each day a constant battle just to survive; every day is a new challenge. I’ve lost everything from my job, my home, my medical insurance, life as I knew it and everything that meant anything. Suffering from severe complications and side effects while fighting for my rights to Social Security Insurance and Disability Insurance… this is what my life has become. Finding help and answers has been very difficult. Advocacy for Patients with Chronic Illness, Inc. has help me and others like me suffering from these same experiences to make sense of our legal rights. They advocate and give us a voice when our voices are no longer being heard.

The Great!

I've personally experienced the results of this organization in...

I am in the process of experiencing results from this organization, I am in the appeals process of getting my Social Security Disability Benefits.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

The genuine caring and support.

The kinds of staff and volunteers that I met were...

Kind, Compassionate, understanding, and willing to go the extra mile to help others with their needs.

If this organization had 10 million bucks, it could...

Create a strong voice for people who have had their voice silenced by their illness, lack of energy, and resources. They would be able to add staff to help more chronically disabled individuals fight for their human rights in a dignified way.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

October 7, 2010

more

October 7, 2010

My daughter has Crohn's Disease and we were faced with a situation wherein the insurance company would not pay for a new, very expensive medication. After receiving information on how to get the prescription paid, they did in fact begin covering the medication. It is a relief to know that there is someone out there who is just available to help without any commitment from us. The Advocacy for Patients with Chronic Illness, Inc. provides information that others tell you about, yet you have no idea where to begin. Here you get specific info., outlines, books, handbooks and even a personal conversation with Jennifer Jaff! I was and still am relieved to feel as if I have someone on my team when it comes to dealing with the daily difficulties of a child living with chronic illness.

The Great!

I've personally experienced the results of this organization in...

My prescription was finally covered by my insurance company. I also utilize the web site for information throughout the year.

More feedback...

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

October 6, 2010

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October 6, 2010

We found this Charity through the Crohns and Colitis Foundation of America. Upon finding Advocacy For Patients With Chronic Illnesses we were in an extremely desperate position. My husband is diagnosed with Crohns Disease, Pyoderma Gangrenosum, Osteoporosis, Vascular Disease, he has a Fistula and a torn Meniscus. Five Specialist in 2 different states have said that he would lose his leg if he should return to work. The nurse from our private disability company, who has never seen my husband, decided all of the specialist were wrong and denied his coverage. We had been fighting this company for over 2 years. We sold a car and put our house on the market not being able to afford these 'luxuries' because of not knowing when the coverage was going to be denied yet again. We currently are living in my inlaws basement. I phoned AFPWCI. They were willing to help. Not only did they help, they did it in a timely manner. They took a personal approach and cared about the outcome of the case. The denial was overturned. For now we breath a bit easier, and live with less stress. I cannot thank them enough for the help they have given us.

The Great!

I've personally experienced the results of this organization in...

a fight against private disability.

Ways to make it better...

If I had to make changes to this organization, I would...

Not.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

personal care and quick response.

The kinds of staff and volunteers that I met were...

very kind.

If this organization had 10 million bucks, it could...

help more people.

Ways to make it better...

it could not have been better.

In my opinion, the biggest challenges facing this organization are...

the insurance industry.

One thing I'd also say is that...

I thank you.

How frequently have you been involved with the organization?

One time

When was your last experience with this nonprofit?

2010

October 6, 2010

more

October 6, 2010

I suffer from a severe pain condition. After being denied by my insurer two times for a nerve stimulator, the only available treatment for my condition, my husband and I were devastated. One day he found Advocacy for Patients with Chronic Illness, Inc. and Jennifer Jaff and suddenly she gave us hope. She took my insurance company to task. They received an appeal several inches thick that had been extensively researched. Although we are several states apart, I could not have felt more attended to. When I went in front of the appeal board, Ms. Jaff briefed me thoroughly the night before by phone and then was my council at the appeal by speakerphone. We were both much better prepared than the appeal board. Unfortunately, we were denied again, so she turned to my employer for a third party review. She called and e-mailed them often to let them know we were still waiting for a decision. After starting medical leave from work due to the pain, I received a call that the third party reviewer overturned the insurance company’s decision. Just recently, I was able to call my surgeon to start scheduling surgery. I have not had a day in over three years without constant stabbing head pain. What this organization did will change my life and they asked for nothing in return. I cannot speak highly enough of them.

The Great!

I've personally experienced the results of this organization in...

Having a twice-denied insurance appeal overturned by a third party reviewer after Ms. Jaff and Advocacy for Patients with Chronic Illness, Inc. fought for me.

Ways to make it better...

If I had to make changes to this organization, I would...

Find a way to let more people know the fabulous things they do! They deserve both the accolades and the donations.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

Jennifer Jaff was both professional and easy to work with. She ofen worked with my husband when I was too ill. I appreciated her flexibility.

The kinds of staff and volunteers that I met were...

This staff is amazing because they never give up yet they also bring a special understanding of chronic illness to the table. It was important to me to be understood.

If this organization had 10 million bucks, it could...

Help more people and hire more staff! I think the staff they currently have work way too hard to help those of us lucky enough to be getting their help.

Ways to make it better...

My experience has been top-notch and I have no complaints.

In my opinion, the biggest challenges facing this organization are...

Current health care laws challenge this organization but their biggest challenge is a lack of adequate funding.

One thing I'd also say is that...

I can NOT say enough good things about this group and I will spend the rest of my life trying to give back to them because they are giving me back a life.

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

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