GUEST BLOG: Erica Iacono on Evolving the Fundraising Process

5K Walk for Hopeby Erica Iacono, Meso Foundation Board of Directors and Rising Leaders Council

When my father died from pleural mesothelioma in April 2000 at the age of 51, I was in a hopeless place, looking anywhere for comfort. The Meso Foundation was in its infancy, nowhere near the organization it is today. Yet, I knew that I wanted to be involved in raising awareness and money for this cause. It was my coping mechanism and I jumped in. But I soon realized that organizing a fundraiser would be a huge undertaking by myself. It wasn’t until 2005, when the Foundation connected me with Janice Malkotsis, another woman who had lost her father to peritoneal mesothelioma and lived near me in New York, that the first 5K Walk for Hope became a reality and we planned something for the following spring.

That first year was tough; we canvassed all of Long Island—reaching out to companies to donate money or services and mailing (yes, real mail was still big!) hundreds of pamphlets and donation forms for the event. We got T-shirts and printing services donated so we could avoid that big expense. On the day of the walk, it was a literal monsoon outside and there was no rain date. We crouched under an awning in our spot in the park and were shocked as about 100 of our family members and friends showed up. I like to say it was like that final scene in “It’s a Wonderful Life” where the townspeople bring in piles of money to help George Bailey. When all was said and done, we had raised more than $20,000 — and this was before we started the online donations!

Now, as we prepare to hold the 10th Annual 5K Walk for Hope, I’m amazed at how we’ve been able to evolve the event over the past decade. In our second year, we were lucky enough to secure a sponsor who generously donated $5,000. A few years later, they were joined by a few others, all of whom have been sponsors ever since. We’ve recognized their generosity by printing their names on the back of our event t-shirts and announcing them at the beginning of every walk.

We also had to learn how to evolve our donation process. Early on, we received feedback that online donations would be far easier than getting cash or checks, so we worked with the Foundation to give each participant the option to form a team and get donations through a friends-asking-friends platform. We’ve even turned it into an informal competition with different teams, and we had our biggest year yet in 2013, raising $30,000 — nearly $15,000 of which was online. That was also the year we posted in local event listings and had an ad in the local newspaper. We were able to draw new participants and even two local college film crews who produced news segments for a class project. It may not have raised money, but it helped raised awareness; it was a few more people that now knew about mesothelioma, how it affects people, and the urgency to find a cure.

It’s hard to keep anything fresh after 10 years, but Janice and I have worked tirelessly to do so. I’ve also personally become increasingly involved with the Foundation, coming onto the Board of Directors in 2012 and recently becoming a member of the Rising Leaders Council. Both Janice and I have high hopes that this 10th annual 5K Walk for Hope, something neither of us could’ve predicted a decade ago, will be our best one yet. We originally decided on our name because we know it’s important to have hope when you’re talking about a disease with such a small survival rate. And we do have hope—hope that we’re making a true difference, hope that we can raise awareness, and hope that the nearly $200,000 we’ve raised will help people affected by this disease. That’s something that’s been at least 10 years in the making, and we’ll keep on doing this for as long as it takes to reach our end goal: a cure.

New Mesothelioma Support Groups Schedule Announced

Find information about Mesothelioma support groups.The Meso Foundation has announced a new schedule for online and over-the-phone mesothelioma support groups. This new schedule will improve user experience and allow more participants to take advantage of this free-of-charge service.

Currently, the Foundation offers online support groups through private Facebook groups for patients, caregivers, and those who have lost a loved one to mesothelioma. This method of participation is available 24/7 and is immediate. To ensure privacy and a safe environment, all participants are screened before they can be added into the groups.

Telephone support groups, available at regular intervals, offer a more traditional support model through moderated calls that allow participants to listen and share as much as they’re comfortable. Participants in these groups are also screened prior to receiving the call-in phone number.

If you would like to join either the online or over-the-phone support groups, please contact Mary Hesdorffer, NP, at (703)879-3820 or mary@curemeso.org.

Listed below is the updated schedule for over-the-phone mesothelioma support groups:

The caregiver support group, Caregiver Conversations, hosted by Mary Hesdorffer, will meet the 2nd Saturday of every month at 11am EST.
Upcoming dates for Caregiver Conversations:
May 10th, June 14th, July 12th, and August 9th

The support group for all patients, Warrior Voices, hosted by Mary Hesdorffer, will meet the 3rd Saturday of every month at 11am EST.
Upcoming dates for Warrior Voices:
May 17th, June 21st, July 26th, and August 16th

The spousal loss support group, hosted by Miriam Ratner and Judith Hicks, will meet the 1st Tuesday of every month at 9pm EST.
Upcoming dates for the spousal loss support group:
May 6th, June 3rd, July 21st, and August 5th

The Mesothelioma Christian Prayer Group, hosted by Reverend Eric Linthicum and Ginger Horton, will meet the 4th Wednesday of every month at 9pm EST.
Upcoming dates for the prayer group:
May 28th, June 25th, July 23rd, August 27th

An up-to-date schedule of over-the-phone support groups can be found at curemeso.org/support.

Introducing Meso-Connect: A Peer-to-Peer Support System

Find mesothelioma support through the Meso Foundation’s new peer-to-peer support system Meso-Connect.This week, the Meso Foundation launched Meso-Connect, a peer-to-peer support system aimed at helping mesothelioma patients and their families to combat isolation by connecting them with peers who are going through, or have been through, a similar experience.

Due to the rarity of mesothelioma (3,500 patients diagnosed each year in the United States) and the aggressive nature of this cancer, most patients feel alone in their fight. For mesothelioma patients, even just obtaining a diagnosis can often be a long process. Finding a specialist and the prospect of drastic surgeries, chemotherapy, and radiation can be even more daunting. For this reason, we have developed Meso-Connect. Through Meso-Connect, the Foundation identifies and connects individual mesothelioma patients and/or their caregivers with members of the mesothelioma community who “have been there, and have done that.” All participants in the program are carefully screened to ensure a safe experience and fit.

This service is aimed at patients in all stages of a mesothelioma diagnosis. For a patient in the early stages of surgical recovery, for example, speaking with a peer who has successfully recovered may provide hope and inspiration. Additionally, the program is also available to caregivers, as well as those who have lost a loved one to meso.

Meso-Connect is also beneficial for those members of the mesothelioma community who choose to be on the helping side. Speaking with patients who need guidance can provide them with a sense of purpose and can serve as a reminder of their own progress.

To participate in Meso-Connect, either as someone receiving help or as someone providing help, patients and families must first register. Once signed up, each participant will be thoroughly screened. Those registrants who indicate they are willing to help others will receive training and guidance prior to their assignment. All participants are expected to comply with the terms, rules, and regulations of the program.

More information about Meso-Connect is available at curemeso.org/mesoconnect.

Facebook Exhaustion?

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There are days when all of us wonder what we are doing online so much of our day. Are you feeling vulnerable when reading stories of others who might not be doing well or fearfully comparing your stories to that of others? This is one of the drawbacks of joining an online community. You take the good with the bad and the ugly. So how can you protect yourself on Facebook?

If you are in feeling sad or anxious, perhaps choosing not to log in or only logging in to read your private message may be a good strategy. Or you might consider a Facebook break, and give the groups time to cool down and then jump back in when you are feeling stronger and wish to reconnect with others who are affected by mesothelioma.

There are many who feel the need to share, share and share again, and others who wish to maintain their privacy and participate on a limited basis. Some friend everyone in sight and then get bombarded with messages and feeds, while others judiciously join in and make friends slowly and carefully. Friends can be fleeting on Facebook. You do have the option to “unfriend” someone whose posts are particularly disturbing to you and perhaps send them a simple note as to why you might be unfriending them.

The Foundation is sensitive to the needs of those in the community and wishes to make the Facebook support group experience one that provides accurate information, support and the ability to connect with others.  We will never exploit those in our community and respect your privacy and emotional well-being.  Please contact any staff members with suggestions, comments, or even criticism. That is how we learn how best to care for our community.

THE TOP 10 REASONS TO GO TO THE MESO FOUNDATION’S 2013 SYMPOSIUM ON MALIGNANT MESOTHELIOMA

bonnie_aMesothelioma – by now you all know how to pronounce it, and you know that being informed is important. You also know about the Mesothelioma Applied Research Foundation or you wouldn’t be reading this blog. But did you know just how amazing their symposia are?

Let me give you an example of just a few highlights that I’ve seen:

1. People hugging people just because they have this disease in common and needed a hug.
2. Meeting a man in the hotel elevator who had a meso name badge, speaking to him and finding out he is Dr. Harvey Pass, the guru of mesothelioma. (We have since had many conversations together.)
3. Hearing the top meso specialists in the world speak about treatment, hope and the future of research.
4. Meeting a researcher who knew who I was because he works on my slides in research.
5. Letting researchers know how important their work is to patients and families.
6. Giving hope to a young mother who came because she had no idea where to turn to and didn’t know what to do next.
7. Putting a face to a name for those who have and will need support.
8. Knowing you are really not alone and there are others who can help.
9. Running out the door, to grab a hold of a doctor who just gave his speech and have him listen and talk to you on a personal level to answer your questions.
10. To meet other caregivers, patients and families affected by mesothelioma.
11. To be able to sit at a table with researchers and doctors and see that they are touched to know patients and families out of a clinical setting.
12. And finally… to meet Mary Hesdorffer, the woman who has helped save so many of us.

Ok so I lied. Not 10, but so many more reasons for you to attend the Symposium. I guarantee you will be so glad you did.

By Bonnie Anderson