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FlakeyMatt
04-12-2005, 01:17 PM
Yesterday’s CHD was a rewarding experience and the NPF should be applauded for putting it together. It was a clear step in the right direction building upon the inroads made last year. Kudos to the entire staff for making it such an uplifting, invigorating experience.

This year, 60 volunteers went to D.C. representing twice as many there were last year. I know many of these people attended despite financial hardship and physical handicaps not to mention the general disruption of their day to day lives. They went to be the voice for psoriatics everywhere in order to fight for further funding of psoriasis research.

I wish all of you could have seen some of the courage I saw displayed yesterday. The bravery of a 9 year-old girl to stand and tell her P story to a room full of strangers. The determination of a man who was willing to show Congressional aids pictures of himself when his skin was e-dermic. The fortitude of those with PA to walk vast distances between buildings despite their obvious pain. The grit of a wheelchair bound woman who refused to let a SECURITY SCARE on “The Hill” keep her from making her meeting.

Now it falls upon ALL of us to ensure that the traction gained yesterday is maintained! I implore everyone to write their Congressional representatives. Also, see if you can visit the local office. The following link will take you to the politcal action section of this website.

http://capwiz.com/psoriasis/issues/alert/?alertid=7318706&type=CO

We must remember that CHD is simply a step in the process. We must grab the reins and keep gaining momentum. If we fail to act, the sacrifices I witnessed yesterday will be in vain!

Yours in P,

FlakeyMatt

RichJ
04-12-2005, 01:45 PM
hi matt,
thank you and the npf and all the people that went to try to get us all help. i will try and help as much as i can. all i can say is that you are wonderful people. i thank you all from the bottom of heart.

Patchsigns
04-12-2005, 02:54 PM
I applaud all of you who have sacrificed to help increase funding and awareness through CHD. I do appreciate all of your valiant efforts. I really do.

Blessings,
Joe

ouchyk
04-12-2005, 02:58 PM
Matt,

My experience as well was nothing short of amazing. For the first time in a while I feel empowered. Meeting with our representatives and putting a face on p/pa was incredible but we can and should do more.

It can't end here.

I agree wholeheartedly that we need to keep up our efforts in advocacy, it's not one or two days a year nor should it be. Our efforts need to be year round to get our messages across. The squeaky wheel does in fact get the grease. Eventually.

Let's all work together as a community towards the groundwork that we have all laid down at CHD.

Look for posts from Joey and the advocacy department. See what we as a community can do to get funding for NIH for research, to get our representatives on board to get bills passed and most of all to find a cure.

Please ~ Let's help ourselves. We can make a difference if you make the effort.

Karen :)

timothy41
04-12-2005, 03:59 PM
Thanks Matt, Karen, and Mike, and everyone that took time out to go to DC for all of us. I hope to see more from our Goverment $$$ for our needs.

I am just wondering, are there some states Senators-HR that would or have more infunce? If there are, what states?

Thanks

timothy41
04-12-2005, 04:05 PM
Nevermind, now I found the NPF legislative info. What a maze getting these acts passed!!

coachG
04-12-2005, 09:06 PM
Thank you all so very much.............great thread Matt!
http://www.robertsdeli.com/thanks1.jpg

greenrachel
04-13-2005, 03:51 PM
This CHD was my first and it was great. It was inspiring to see so many people active in such an important cause. Hopefully this momentum will continue to grow.

Rachel Green

littleangel
04-13-2005, 04:03 PM
i can't even convey how much CHD changed me.

being newly diagnosed, i am constantly learning and changing and becoming frustrated and overcoming it.

i can honestly say that since i got home from CHD i have not stopped thinking about the steps that i am going to take in the future.

i am putting my whole heart into battling my P. not just with medicine anymore, but with confidence now.

seriously, i would do it all again TOMORROW if i could :D

grannyfranny
04-13-2005, 04:33 PM
My thanks to all of you for taking time and spending money for all of us. :)

MrsSooners74
04-13-2005, 04:48 PM
Thank you all for all that you have done at CHD... Im sorry that I couldnt make it but I am so grateful to all of you!!!!!

makeitgoaway
04-13-2005, 07:29 PM
The whole CHD experience was moving for me. It was also very inspiring. I took part in three very powerful meetings. All three of them were very positive. All of the representatives I met with seemed sympathetic and passionate to our cause with a willingness to help. Hearing some of the personal stories and seeing with my own eyes how much pain people were in while making this effort almost moved me to tears several times. Yet, everyone did everything asked of him or her and persevered. The NPF also did a fantastic job keeping the day organized.
I would like to give a huge cyber hug to all who participated.

Now that CHD has passed, our work is not over, rather just beginning. There is a lot of follow up that now must begin to keep our momentum going. We can make a change and we can make a difference!



I have a few pictures that I will also post soon.

ladybloede
04-13-2005, 10:12 PM
Thank you everyone! I'm glad you had a good time and can't wait to help with the next steps! You are wonderful people :)


mari

kkellogg
04-14-2005, 08:55 AM
Well said, everyone. I too feel a renewed sense of hope after my experience in Washington. All of my meetings were very positive. I have to admit that I was concerned about being the only constituent from Florida. I worried that my voice alone would not be loud enough to convey our important messages.
My fears were immediately dissolved by the warm reception I received during my first meeting in the House. What began as my own story evolved into a tapestry of collective life experiences... a synthesis of shared trials and dissappointments. My story became your story. I suppose this is the very reason we cling to each other the way we do. Support each other. Become angry at each other. And yes, fight for each other. I am proud to have been there. I am looking forward to taking further action.

Fight the P,

Krista

JodyGK
04-14-2005, 09:07 AM
You took the words right out of my mouth, Krista. CHD was powerful, awesome, inspiring, motivating. I too left with a renewed sense of hope and personal commitment. All my meetings went well, but my last meeting with my senator's legislative assistant really capped it for me. Not only had he done his homework before the meeting ("I had no idea there was an arthritic component to PA!"), but during the meeting as we each told our stories, you could SEE the compassion in his eyes. When we described the 400 deaths a year attributed to e-dermic P, he exclaimed "that's over one a day!" He was listening and learning.

I was also moved, like Steve, by the personal sacrifice of those who attended, financially, emotionally and physically, to help make our presence felt on Capitol Hill. I am determined to keep the momentum going in my corner of the world. Capitol Hill Day will take priority in my life, not only the one day a year we attend, but every day in follow-ups and contacts with politicians, nurturing the relationships we started on Monday.

I am still filled with emotion, remembering the shining faces and enthusiasm of everyone there. CHD left its mark on me physically, as my body recovers from the strain put on it this week. But the mark it left on me emotionally far outweighs any aches and pains I feel today.

Jody

rosy3939
04-14-2005, 10:23 AM
Dear friends,

I just got back to the office today. I have not had a good change to reflect back on the wonderful experience we call Capital Hill Day. This must I do know it was a wonderful experience and return totally energized. The old friends I saw again and the new ones I met were great.

To see those who were in great pain and discomfort walking the halls of our congressional office buildings to make there appointments. They were an inspiration. To meet fellow suffers and listen to their stories of this disease, in pain they were there to let their elected officials know of their plight and that of 6+ million other sufferers who couldn’t be there.

It was inspiring to see young adults fighting for funding and recognition of our disease so that other particularly younger than themselves won’t have to suffer like they have. I met family members who were there to champion there children or their parents. I met a wonderful young lady who there to support her friend and lobbied her representative on her behalf.

To everyone who was worry about me and my pains and tribulations, thank you. I have been going so rough times lately with my disease as I am in a major flare. Only those that suffer with this disease truly understands what we go through but we are blessed with many family and friends who truly try.

To the National Psoriasis Staff who planned and pulled everything together for Capital Hill Day thanks to you all of you. Those who came to Washington and those who worked behind the scenes to make it a great experience for all. . A special note to Joey, you done good so you get a pass until Monday without me complaining to you about what we can do better and why we aren’t moving along at a faster pace (remember Joey my life expectance is a lot shorter than yours).

Last but not least a solemn pledge to each and every one of you. I will do every thing I can to fight for the cure for psoriasis and psoriatic arthritis. I will be relentless and determined in this quest. I will beg, cajole, badger, plead, annoy, bother everyone on these boards to participate to the level they can and then some in the fight against that which pains us, disfigures us, ails us!

Mitch Rosenberg

seedoubleyou
04-14-2005, 10:49 AM
What began as my own story evolved into a tapestry of collective life experiences... a synthesis of shared trials and dissappointments. My story became your story.

From the bottom of my heart, THANK YOU. I'm afraid I haven't quite found my own voice yet beyond this forum. :( I hope someday (and soon) I WILL.

'til then, it is heartwarming to know that there are those who will sacrificially stand and fight -- for me, and so many others.

nitegale
04-14-2005, 01:08 PM
To each and everyone of you, my heartfelt thanks for all the sacrifices you made in order to attend CHD. It must not have been easy both physically and financially to do what you have done.

You are fighting for all of us here and your efforts are felt throughout this thread.


Marie :)

SandraJean
04-14-2005, 01:24 PM
Hi everyone,

I just returned late last night from attending the CHD's in Washington DC. I had such a wonderful time and feel so, so good about the meetings that took place on Capital Hill. It was a day I will never forget and want to join again next year in going. It was the first time for me to go to do advocacy work and I commend NPF for all the preparation and all the work they did to make my trip so successful. It was so great to talk to the represenatives from my state and have them be very interested in all we came to discuss with them. I'm looking forward to follow up letters to them all and hopefully have them get involved for all our concerns and well needed research. I was honored to represent this organization and hope I was able to be the voice of all who are afflected with P and Pa.

I truly have made so many wonderful friends that I only just met for the first time in person. We have alot to be proud of in this group as I was welcomed with open arms and found myself becoming so much a part of all their lives and felt like I had extended family in everyone I met.

I thank all who were able to come, were able to write letters, were able to sign petations, all who actually pushed a scooter across the "hill" when mine died, to all the speeches, the meetings, the progress that was and the continued interest in "making this happen". I truly expect to see so much progess in our future and hope our numbers grow in service and actions and care for the coming months and years. Everyone of us has a place to make a difference in finding a cure and and seeing clearing and help in all our futures.

The impact our people have made in Capital Hill is just the beginning and I thank all of them from the bottom of my heart. I really feel energized and look forward to futher events and ways to help. I just signed up for the convention, and I would like to start a support group in our upstate New York area.

Thanks to all,

Sandy :)

RichJ
04-14-2005, 01:37 PM
This CHD was my first and it was great. It was inspiring to see so many people active in such an important cause. Hopefully this momentum will continue to grow.

Rachel Green
hi rachel green,
welcome to the p family. you have met some of the wonderful people on here and will find alot great info. welcome and nice to meet you and thank you for going to chd.

thank you all that went.

jshearer
04-15-2005, 09:12 AM
Just wanted to let everyone know that we sent out a press release about the letter-writing campaign and Capitol Hill Day.

You can find it here, on Yahoo. (http://biz.yahoo.com/prnews/050414/sfth120.html?.v=1)

More than 4,800 letters were written in the 48 hours after we emailed the Action Alert to our Members and friends.

If you have friends or family who would write letters, please email them the link to our Web site (www.psoriasis.org) and ask them to join us in asking Congress to increase funding for psoriasis research.

This is a great compliment to our Capitol Hill Day meetings.

The basic research that happens at the National Institute of Arthritis and Musculoskeletal and Skin Diseases will lead to a better understanding of the genetics and mechanism of the disease. In turn, this will lead to better treatments and, eventually, a cure.

Taking action through our letter-writing campaign is quick, easy, and effective. Please spread the word to friends and family.

Thanks,
Joey

SandraJean
04-16-2005, 04:22 PM
Hi everyone,

I just finished my follow up letters to the senators and congressmen that I visited in Washington. DC. I'm running out tonight to get them in the mail. I'm sending out 4 of them and gave them my address, telephone number and e-mail address, for them to get in contact with me about any questions. I looked up on the chart on the other CHD posts and found out two of the congressmen have signed on for the bill. Yea!!! Looking forward to any more information I can get and will try to continue to "fight the p".

Take care,

Sandy :)

Patchsigns
04-16-2005, 05:42 PM
Hey Look!! I received a response from Senator Lautenberg from New Jersey!!

It's pretty neat. He really has worked hard for us in the past.


April 14, 2005


Mr. Joseph J. Borowski
21 Madelyne Place
Fair Lawn, NJ 07410

Dear Joseph J.:

Thank you for contacting me with your support for arthritis research and
treatment. I appreciate hearing from you on this important topic. Arthritis is
a truly debilitating disease affecting over 70 million Americans, and I strongly
support increased funding for arthritis research. I supported S. 2338, the
“Arthritis Prevention, Control and Cure Act” in the last Congress. This
important legislation has not been reintroduced, however I will take your views
into consideration should the Senate consider it this year or next.

I am a strong supporter of research conducted under the auspices of the
National Institutes of Health (NIH), particularly the National Institute of
Arthritis and Musculoskeletal and Skin Diseases (NIAMS). The Fiscal Year 2005
Consolidated Appropriations bill contains $515 million for NIAMS, an increase of
$14.5 million over last year’s funding. I am disappointed that this increase was
so meager, and I will advocate for increased funding this year.

I also support efforts to increase coverage for innovative treatments for
arthritis under Medicare and private insurance. Although arthritis can be a
serious and debilitating disease, it has been the subject of many exciting
medical advances. Not only are these new drugs effective, but they can be
self-injected, saving the patient the time, inconvenience, and cost of medical
visits. The Medicare Prescription Drug, Improvement, and Modernization Act of
2003 (MMA) contains a demonstration project for Medicare to cover self-injected
biologic drugs for a limited number of patients – 50,000 people – or up to $500
million in total drug costs. While this is an important step forward, this
limited project is inadequate in my view. There are millions of Americans whose
lives could be greatly improved by access to these drugs, and I believe that we
must extend this coverage to them all.



I will continue to support increased funding for research and treatment of
arthritis. Again, thank you for writing.

ladybloede
04-17-2005, 02:17 PM
That's great Joe! Sounds like an actual, more personal letter! Now we just need some more of these kind of responses!

mari

meghan_72
04-17-2005, 03:27 PM
Wow, of all the correspondence I've had in the past few years with representatives, that letter from the New Jersey rep is the best!!

Hello to everyone who attended!

I just wanted to reiterate what so many others have said! The CHD 2005 was an awesome experience! Everyone was so willing to share their stories and advocate for themselves and everyone else with these awful diseases. Everyone had so much positive energy and enthusiasm! What an inspiration!

To the NPF team, y'all did an absolutely fabulous job! Very organized, all very relevant. I can see great things in next few years! ;)

It was really difficult for me to share my story the first year I went to DC in 2003. I didn't feel like my story had much impact compared to other people I was with- people who had JRA, multiple joint replacements, etc. Yet, at the same time, I was on disability because PsA had made it impossible for me to work. Duh! All of our stories have a great deal of meaning! We all have experience.

Over the years, medical research has started to narrow down some of the differences of PsA, and it is an insidious disease. Without advocacy, our representatives wouldn't know the extent of the impact of this disease. The medical community wouldn't realize that we want answers and cures and won't settle for less!

SandraJean
05-01-2005, 10:15 AM
Hi everyone,

I just wanted to give you all an update as to what's happening in my" neck of tge woods" I was so inspired by CHD's and I had noticed Joey had put an article about the letter writing campaign and CHD that was posted from Yahoo, that I decided to contact my local newspaper about the event. Just last Friday a reporter called me and is coming to my house tomorrow (monday at 10 am) to do an interview with me about NPF and CHD. Also I'm trying to start a support group in this area and mentioned that in my letter to the newspaper. I contacted Joey last Friday and he got me incontact with Paula and she sent me material to give to the reporter, plus Jan from the support groups gave me information to let them know about. So wish me luck tomorrow and I hope to see an article in the newspapers here to continue to let peopple know and help with p and pa.

Sandy :)

ouchyk
05-01-2005, 10:32 AM
Good luck Sandy! :D I know the community will be well represented!

My thoughts & hopes are that the folks who went to CHD who have nothing to do with the boards are doing the same types of things....perhaps we can get Joey and Paula to update so folks here know how the word is getting out! :) The more attention that is brought about the closer we can get to a cure or at least the best of possible treatments.


Karen

Kimbercat
05-01-2005, 12:13 PM
Sandy,

That's wonderful news!! :) You would be an absolute inspiration as a support group leader, and to anyone who comes in contact with you. Best of luck, and keep us posted on your progress.

p.s. I knew I should have asked for your autograph when I had the chance! :D

littleangel
05-01-2005, 12:51 PM
sandy that's so great! let us know how it goes

makeitgoaway
05-01-2005, 03:47 PM
Sandy-

Thanks for going the extra mile. I know you are going to do great!

Please keep us posted.

Steve

MikeK
05-01-2005, 04:06 PM
That's great, Sandy! :cool:

Let us know how it goes.

Can't wait to "read all about it".

Mike

SandraJean
05-01-2005, 04:17 PM
Thanks everyone for wishing me luck. I'm going to gather my materials that I have and get ready to present it all tomorrow. If anyone has any extra thoughts, let me know and I can mention it tomorrow.

Thanks again everyone!!

Sandy :)

RichJ
05-02-2005, 03:29 AM
hi sandy,
good luck today and thank you for all you do to help others.

have a good day all

richard

SandraJean
05-02-2005, 08:15 AM
Hi everyone,

Just wanted to drop a quick note to let you all know how the interview went. His name was Jeramy and is a reporter for the Brighton Pittsford Post. I was able to give him the packet that Paula had sent to me over the weekend about the National Psorisis Foundation which includes facts about NPF, P and PA. I also included the newpaper article from Yahoo. Also I had put in the information Jan had sent me about support group. I told him why we all went to Capital Hill and the importance of research, having someone from the House or Senate to Cosponsor the Arthristis Prevention and Cure Act and also about asking for August to be recognized as Psoriasis Awareness month. We discussed the importance of having a support group in our area and I gave him information that was in the P newsletter about supprt groups. I let him know about the NPF web site and also the "grand opening" of the new and improved site opening on May 6th. Also I copied out the information about the Senators and Representative that have sign the bill already and gave that to him to. I included the posts from Jody and Joe from California and New Jersey about their responses from their representives. Tried to get the letter from Sally from Indiana printed off for him too, but he came too eariy and I wasn't able to get it printed in time, but told him about it. He would like me to send the picture of us from New York that was taken with Senator Clinton's aid. I'm trying to copy it off the computor now and see if I can sent it as an attachment. I'm not that good about know how to send thing.He gave me his e-mail addr3ess. My husband will be home soon and I think he can help me.
Well, this wasn't a short note, but I wanted to let you all know how things went. It should be in the paper by this Wednesday, and if not this wednesday, then the following week.
I will let you all know when it hits the papers. Thanks,
Sandy

ouchyk
05-02-2005, 08:25 AM
:D That's wonderful Sandy!! :D

Does the paper have an online version? If not, I will PM you my address so you can send me a copy!

Good luck getting the support group going, I know it's a lot of work but I'm sure a lot of folks in your area will appreciate it.

Karen :)

MikeK
05-02-2005, 08:33 AM
I'm glad that it went so well. :cool: I can't wait to "read all about it"! :)

I just checked to see if the Brighton Pittsford Post was available online. The good news is that they do have a website. The bad news is that non-subscribers have to pay $2.95 for a 24 hour online subscription. Here's a link: http://www.mpnewspapers.com/brightonpittsford.php.

Mike

grannyfranny
05-02-2005, 10:27 AM
Sandy, that's great.

One of our local TV anchors lives right beside me. Last year, I ask her about doing something here. She ask me if I was willing to be on TV. I said yes. She said she would give my number to their health reporter and tell her to call me. She never did. I will ask her again or maybe call the station.

rosy3939
05-02-2005, 12:24 PM
Way to go Sandy.

Any time we can raise awareness for the sufferers of Psoriasis & Psoriatic Arthritis we are better for it. I am looking forward to seeing the article when it come out. I am sure you did a greattttttttttttt job. That is great.

Mitch :) :) :) :) :) :)

ladybloede
05-03-2005, 07:48 AM
Great job Sandy!!! I'm excited to read the article!


mari

SandraJean
05-04-2005, 10:00 AM
Hi,

I just got the newspaer and so far the newspaper article wasn't in it today. The reporter said if it didn't get in todays edition, they would put it in next Wednesdays. I only quickly skimmed the paper, but I didn't see anything yet. Will keep you posted. Thanks everyone,

Sandy

rosy3939
05-04-2005, 10:28 AM
Can't wait to see it in print. I am sure it is writing worthy of Pultizer Prize. Please keep us posted on when it comes out. Onec again Sandy good job on spreading the word.

Mitch :) :cool: :cool: :cool:

RichJ
05-05-2005, 02:35 PM
heres a letter i got back

Thank you for contacting my office regarding health care
concerns. I appreciate hearing from you.

As Chairman of the Senate Appropriations Subcommittee
on Labor, Health and Human Services, and Education, it is
essential that I remain fully informed in all areas of health care
policy. During the 109th Congress, we will continue to debate
various health issues, such as the complex question of managed
health care and the Federal role in its regulation and historic
reforms to the Medicare program, including the development of a
prescription drug benefit for seniors. Among my top legislative
priorities this Congress is the continued fight for necessary
increases in funding for all aspects of biomedical research within
the National Institutes of Health and the Centers for Disease
Control, and ensuring the appropriate examination and refinement
of the vital public health programs administered by the Federal
government.

Again, I appreciate your taking the time to bring your
views on this issue to my attention. Your input is vital as I
continue to press for targeted health care reform and urge
Congressional leadership to make this reform a top priority. If you
have any further questions on this issue or any related matter,
please do not hesitate to contact me or visit my website, at
http://specter.senate.gov.







"nameline"
"title"
"organization1"

Karen_M
06-07-2005, 02:37 PM
Sorry it's taken so long to post this; it took awhile to get permission from the paper. Enjoy!

PITTSFORD WOMAN STEPS UP AS PSORIASIS ADVOCATE
Starting a support group and participating in Capitol Hill campaigns are among Sandra Hawbecker's activities

By Jeremy Moule, Brighton-Pittsford Post
jmoule@mpnewspapers.com

Since she was a child, Sandra Hawbecker has knitted. "It's a task that I personally think I am lucky to be able to do," she said.

Hawbecker, who lives in Pittsford, has psoriatic arthritis. At one point, most of her joints were affected by the condition - painful, swollen and stiff. She believes that years of knitting have helped, but credits a trial drug with the main role in checking the symptoms. At last count, the number of her affected joints had dropped to 36, she said.

In addition to the psoriatic arthritis, Hawbecker also has psoriasis, which causes dry, red scaly patches on her skin and can cover as much as 95 percent of the body. Psoriatic arthritis and psoriasis are related, with about 10 to 30 percent of people who have psoriasis also having psoriatic arthritis, according to the National Psoriasis Foundation.

Hawbecker is not content to just live with the conditions. She wants to see progress in treatments, and she wants others affected by psoriasis or psoriatic arthritis in Rochester to have a support system.

She has tried to drum up research funding on Capitol Hill and is starting a local support group through the National Psoriasis Foundation.

In April, she took a trip to Washington, D.C., as part of a five-person contingent from New York to urge local representatives to support the Arthritis Control and Cure Act of 2005, as well as to push for recognition of August as Psoriasis Awareness Month. She met with staff from the offices of Congressman Randy Kuhl and Senators Chuck Schumer and Hillary Clinton.

Hawbecker is also concentrating on efforts closer to home. She is working to form a support group in Rochester for people with either condition. They have to deal with time-consuming treatments that can be expensive.

"What works for one person will not work for another person," she said.

Those with the disease can become self-conscious: "It can be an embarrassment when summer comes to fly to wear short sleeves or shorts," Hawbecker said.

And they can become depressed, she said.

A support group would give people a place to talk about the issues and challenges they face among people who have had similar experiences. It would also give them access to some helpful resources.

"You're able to bring in doctors, you're able to bring in speakers. You have the camäraderie of another person," Hawbecker said.

06-07-2005, 03:06 PM
Can you hear me applauding? Wonderful job.

Annie

seedoubleyou
06-07-2005, 03:17 PM
Way to go, Sandy!!!!!!

(OR, as my son would say, "SWEEEEEEEEEET!!")

MikeK
06-07-2005, 03:25 PM
Clap! Clap! Clap!

Not even a bomb scare could keep Sandy from doing what she came to do!!!

Mike

littleangel
06-07-2005, 03:26 PM
making us proud time and time again :D

SandraJean
06-07-2005, 07:19 PM
Hi

Thanks for getting this article up on the boards.

I'm still looking for a place to hold support group meetings at and also needing voluteers to help with getting it going. I've had several meetings with Marilyn (fptmom) and Joe (from Genetech). We're going to start posting signs around to advertise for the upcoming support group. Any one out there in the Rochester, New York area interested in helping please e-mail me or call me. My contact information is in the support group area for the Rochester NY area.

I've also had the good forture to go to a town meeting where our NY Representative Randy Kuhl was at and talked to him about more funding for research and the Dear Colliage letter going around in the House last month. Have received letters from Senator Hillary Clinton, and a letter from Rep. Randy Kuhl.

We all can be heard and helped. One step at a time.

Thanks,
Sandy

kkellogg
06-08-2005, 06:26 AM
Awesome job, Sandy. Way to fight the P! You too Rich!

rosy3939
06-08-2005, 10:02 AM
The Article just go to reinforce my first impression of you. Your great. Anytime we can enhance the public awareness of eith psoriasis or psoriatic arthritis it is a step forward. How you have put your self out there to advocade and speak out for the 6,000,000 million people allected is amazing.

Keep up the good work. We never know who we will effect and help with our words and deeds.

Mitch

PJ Leary
06-08-2005, 07:53 PM
Hi Sandy,

Sorry I did not post sooner, personal issues. You are an incredible advocate and a lovely person. I so enjoyed meeting you and your husband in DC! Congratulations on your sucess, I see you becoming a powerful advocate. As always, you have my personal commitment of support.

CHD was a moving experience for all of us, those who returned for a second go, and those who joined us for the first time. I was so pleased that you decided to come. My daughter loved getting to know you, in many ways I believe you are like souls. Personally, I was so pleased to be able to introduce her to this wonderful community and teach her about advocacy at the same time. Like most folks who come to an NPF event of any type for the first time, it changed her life, just as the experience did for you.

For anyone who has never had the experience, it is hard to describe in words how powerful this can be, and usually is. It is almost worth selling your firstborn to finance the trip. ( Note: ALMOST )

See you in Boston.

RichJ
06-09-2005, 09:30 AM
hi sandy,
that's wonderful thing you did. congrats and thank you for what you do

have a good day


richard

ladybloede
06-09-2005, 11:54 AM
Awesome job, Sandy!!!