IC Angel Program Honors Legacy Of Diane Manhatten Lopresti

For the past couple of months, we’ve noticed that the Interstitial Cystitis Association has launched a new donor program called the “ICA Angel Society.” We are greatly disappointed that they would invoke a name very similar to a program created by the IC Network in 2003 to honor the memory and life of ICN Assistant Manager Diane Manhatten Lopresti. This is what I wrote when we first started the ICN Angel program.

“In response to the tremendous outpouring of support and condolences in the memory of ICN Asst. Manager Diane Manhattan-Lopresti who was tragically taken from us on October 16, 2003, we have created a new program to honor her memory. Diane was a true IC angel. She believed in angels and she believed in support. She inspired others to keep trying. When a patient was down, she lifted them up. When a patient was confused, she offered helpful information. When a patient was crying, she gladly shared her shoulders for anyone to lean on.

An IC Angel is someone who believes, in their very heart of hearts, that no one should suffer alone. Someone who is willing to lend a helping hand, a moment to talk, a supportive email, a chat in our chat room or an orientation for a newly diagnosed patient. An IC Angel is also a role model, a patient who is active and involved in the IC movement. They may run a support group or perhaps just offer support by email. When an idea strikes, they share it with others to get them motivated and involved. They might write an article, create a new resource or share a helpful tip. An IC Angel believes that by working together we can make a difference.

On the ICN, our IC Angels will honor Diane’s memory by maintaining her legacy of action. These aren’t huge, daily jobs. They are small acts of kindness that can be temporary or may just need one task done. These are the projects that Diane and I had talked about. Real needs for real IC patients of all ages. You might help by running a support group or by contributing a story that helps to explain IC to children. Disability rights, job hunting (or how to work from home), how to locate affordable medications.” – View our original IC Angels webpage: https://www.ic-network.com/icangels/

We also launched our magazine, the IC Optimist in 2003 and offered an ICN Angel Subscription for donors who supported our work.

For more than a decade, the IC Network was the only IC group in the USA to provide meals and gifts to low income patients during the holidays with our IC Angels For the Holidays program.

We take STRONG exception to the use of a concept that we established to honor a patient who volunteered for the IC Network and dedicated much of her life to the work that we do. We respectfully request that the ICA select a new name for their “IC Angel Society.” How about using the “ICA Donor Society” instead? or the “ICA Patron Society?”

Diane’s IC Angel Legacy

Diane, like so many of you, struggled with significant IC symptoms. Back in those early days, finding physicians that not only believed her but also provided compassionate treatment was hard. She endured many ineffective treatments and, sadly, a completely unnecessary hysterectomy.

Diane wasn’t an academic but she ALWAYS wanted to learn. Over the ten years that I knew her, Diane became a force in the IC community. She read everything she could about IC. She wrote articles and even learned some programming so that she could help add new material to our website. In fact, she created a comprehensive summary of the first medical text book published for physicians on IC by Dr. Grannum Sant. It was her biggest ICN project.

She found purpose in helping others. Every day, she got up at about 4am EST so that she could answer questions put on the IC Network Forum over night. She’d help patients for about two hours before she then went to work as a waitress at a local restaurant where she was beloved by her customers.

After Diane’s death, we learned so much more about her acts of kindness in the dozens of testimonials and postings shared online and by phone. She frequently reached out to patients in crisis by phone. Unbeknownst to all of us, she also sent some of her precious hard earned money to other patients who she felt were more needy than she was. She also created beautiful cross stitch projects that she gave to patients in need.

Despite the fact that I lived in California and she in New Jersey, we became very close friends, often speaking on the phone daily.  We were IC sisters in almost every way.  I was truly blessed to be able to visit her and her husband Russ in their home in New Jersey where I discovered the source for her passion and inspiration. Diane’s had one of the largest collections of angel memorabilia, Precious Moments, in the country. Angels gave her hope, strength and courage to face her many difficult IC days.

Diane died on October 16, 2003 at the age of 44 after a long battle with emphysema and after receiving care from Charles Cullen who was working at a hospital in New Jersey. Her family shared that authorities believe that she may have been one of his last victims. He was fired from Somerset Medical Center on October 31, 2003 and was arrested in December 2003. Read more

Do you want to be an IC Angel?

Diane believed in committing small acts of kindness and this is what we encourage you to do. Here are some ways that YOU can be an IC Angel and help this movement!

#1 – Start an IC Support Group in Your Community

This is such an important need. Even if you just work with a handful of patients twice a year, you can help break the isolation of others, offer support and encouragement and truly make a difference. It’s the most important gift of all! Please visit our Support Group Resource Center to learn more.

#2 – Reach Out To A Support Group And Volunteer Your Help

Every support group leader needs help. They really REALLY do. Whether it be someone who can copy articles to pass out for a meeting or a co-facilitator, they will appreciate anything that you can do to support the group. Reach out to your nearest support group and ask them how you can help! Find a list of support groups here!

#3 – Offer Hope To Newbies

If you participate in the ICN Support Forum or any other on-line IC Support Group, take a moment and reach out to any newly diagnosed patients. Give them hope and encouragement. Help them learn more about IC, such as the IC Diet or the AUA’s six step treatment protocol by encouraging them to visit our website! 

#4 – Be A Shoulder To Lean On Patients In Flares

Every IC patient experiences sudden and often disruptive flares. They can occur after eating certain foods, traveling, sex, high periods of stress and so forth. Take a moment and share with them some of your best flare fighting tips and, better, encourage them to sign up for our free newsletter and download, as a gift, the free ICN Guide to Managing IC Flares. 

#5 – Participate in the September IC Awareness Month campaign.

If you’re not happy with the way that you’ve been treated… If you’re struggling to find doctors who know about current IC treatments…. If you’ve experienced disability discrimination on the job…. FIGHT BACK! How do you do it?? By educating others about interstitial cystitis. The IC Awareness Month campaign contains a wide variety of materials that you can download and share! If not, then who?? We’ve all got to do our part to spread the word that IC is real and treatable!

We strive to honor Diane’s legacy each and every day! She was and always will be our first IC Angel!