Letter from the Spokeswoman. . . Susan Lillard-Roberts

Fall 2004

I am writing this to all of you upon our return from Washington DC. This past week (and actually the past 2 months in preparation) has been a whirlwind of activity as the Mold Help Organization assisted in the grassroots movement of MD Awareness Week with Sharon Kramer, Elisa Larkin, Nancy Davis, Jonathan Wright, Jeff O’Conner, and Congressman John Conyers’ office, primarily Joel Segal. This was a monumental movement in itself as we brought more than twenty groups together when we lobbied in Washington DC last week to work together to ask our congressional members for emergency appropriations to assist schools in properly remediating contaminated buildings and improving air quality and for families who are currently impacted by mold. We also brought asked that that our members of congress co-sponsor HR 1268, The US Toxic Mold Safety and Protection Act, and introduce companion legislation for HR 1268 in the Senate. I was personally very pleased with the response I received from my own representative, Alison Kushner, at Darlene Hooley’s office. I would also like to thank my dear friend, Bill Ward, for being the type of staffer that really makes a difference in one’s life. Darlene Hooley is very fortunate to have such loyal and caring people on her staff.

We also spent the past week (and also the past 2 months in preparation) with Dr. Simone Sommer with the formation of the M.A.P.E.R. (Mold Advocacy Prevention Education and Research) Coalition and planning the press conference with Bianca Jagger and Congressman John Conyers with the following briefing at the Rayburn Building. She spent many long hours working on congressional invitations, agendas, training plans, and training standardized/regulated procedures. Simone and I spent long hours working together on almost every aspect of this, but in the long run, I think it was well worth the effort.

Much was accomplished but much more needs to be done. Our office will be increasingly involved as we become more united in the future. I thank my dear friend, Sharon Kramer, for her outstanding contribution in reaching out and really making a difference. She spent some long days on Capitol Hill and thousands of dollars of her own money making packets to hand out to Congress. The only way we are going to get any action is to maintain momentum and communication between all of the reputable organizations in the nation.

I was finally able to meet so many of the voices that I spoke to on the phone in person last week, and what wonderful people met! It was great to match the faces with the names and show everyone how much I respect your opinions and support. All of the e-mail in the world is wonderful but actual contact is a beautiful thing and we appreciate and admire the respect and dedication. Thank you to all of you who came to show us your dedication and I apologize if I couldn’t personally thank you. Please e-mail me and I will try to answer you personally, if time allows.

Thanks to all of you for making MD Awareness Week a success. Further instructions to write your representative (in case you haven’t done so already will be done so if you sign the petition now.) This is extremely important if we are going to get important emergency appropriation funding to the mold victims who really need it now. The brunt of jokes may be made about hurricanes right now but the fact is that hurricane disaster relief is a major problem and we need to do something immediately. For the average person, this is an automatic acknowledgement.

In dealing with people on the phone who are severely mold-impacted, one thing comes to mind. Patience, patience, patience. Sometimes, it appears as though the most immoral elements surface in a person as they try to communicate their innermost feelings as I try to get them to share their symptoms to me on the phone at times. An important thing to note and something to empathize with, the biggest short come with a mold-impacted person, and believe me, there are more out there than you can imagine, is that due to their short term memory, they tend to internalize their words that they are trying to remember to verbalize next as a precursor in a conversation, thus not really listening to the actual conversation at hand. Due to this, many of these “victims” tend to have a veer towards anxiety as they are desperately trying to remember what it is they are trying to say next, and that is one of the reasons many mold impacted people are hard to communicate with. The overall perception is that the person appears to be difficult and “aggressive,” when it is many times the opposite. These are just a few of the observations I have noted when dealing with mold-impacted individuals over the years and I hope this helps you in better understanding yourself and family members.

As we communicate with one another, why not take it one step further and assume that the person that we are initiating the conversation with may have communication barriers? This makes life so much easier when we are trying to deal with someone one on one.

If you happen to be one of the unfortunate souls out there who fall victim to someone who takes advantage of you or your current situation, be careful and learn from your experience. There are those who will try to take advantage of you, whether it be even an individual, or just a web site, discussion board, or a business. Even a few non-profits have been known to be corrupt, so it is important to never let your guard down until you have made some inquiries. Inquiries can me made to large, established organizations, such ours, and several others, as well as the Secretary of State; in order to see if there have been or there is any current investigations. Make sure that you make several inquiries to ensure you are getting accurate information. Be careful with who you share your information, stories, donations, or anything else with until you know exactly who you are dealing with. But, most of the communities who represent the people who have befallen themselves to this really do care.

If you have any additional questions, please contact us on the index page or the join the discussion board. Also check the online resources first as we have tried to address most frequently asked questions on most of our search engines. Fall is a time of change and there are many new changes to look forward to in the future to so keep checking back and thank you for making Mold Help the number one source for information, education, referral, resources, and solutions with indoor air quality and fungal disease issues. We still are the most popular web site in the world for current information on this topic due to your overwhelming demand.

Cheers,

Susan Lillard-Roberts