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Walk-Along for Lupus



Last Updated: 12/8/2009

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Gender: Female
Status: Single
Age: 38
Sign: Scorpio

City: BELLMORE
State: New York
Country: US
Signup Date: 8/28/2007

Blog Archive
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Tuesday, August 18, 2009 
Wednesday, March 11, 2009 

Current mood:  breezy
New York State is considering two important pieces of legislation.
AA00284 now in the Assembly Ways and Means Committee, creates an education and outreach program for the autoimmune disease known as lupus; provides for an advisory council consisting of representatives.. of people with lupus and their families and health care providers who specialize in treating lupus: appropriates funds for the lupus education and awareness program. Sponsor: Aurelia Greene.

S02847 now in the Senate Finance Committee creates an education and outreach program for the autoimmune disease known as lupus: and authorizes an appropriation. Sponsor: Diane Savino.

Tell your elected official to support these bills - HERE..S HOW:

Please take a moment out of your schedule to help make a difference for New Yorkers living with lupus. Follow these instructions on how to call and write to your officials.

1. Click http:..//assembly. state. ny. us/mem/ to find out who your local officals are.

The right side of the webpage asks for you to enter your zip code to find the Assembly Member representing your area.

Click http://www. senate. state. ny. us/sdlookup. nsf/..Public_..search?openForm to find out who your state Senators are.

2. Once you get the name(s), check these links below to see if he or she is on either of the two committees currently reviewing the lupus legislation.

Assembly Ways and Means Committee http:..//assembly. state. ny. us/..comm/..?sec=mem&id=41


Senate Finance Committee http://public. leginfo. state. ny. us/..STATDOC/..COMS13. HTML


3. If you find one of your legislators on either of these committees, please make a call. Call both the local district office and the Albany office; their contact information is on their web page.Please urge them to support the lupus bills! Everyone who is of voting age in your household should call or write seperately as you are all constituents!


The following scripts are guidelines to give you an idea what to say or write. You can of course use your own words, but please keep the phone call scripts short and to the point. Letters can have more information, but keep them under one page.
Sample Script for Phone calls

My name is (XX), I live in (XX), NY and am calling to ask Senator/..Assembly Member (XX) to please support S2847 which is now in the Finace Committee (or to please support A00284 which is now in the Ways and Means Committee). I have lived with lupus for (XX) years or I have lived with (XX) who has had lupus for (XX) years. Lupus has affected me and my family in so many ways and has interfered with almost every aspect of our lives.
Lupus suffers from lack of professional and public awareness more than any other major disease. This legislation would support a statewide education and outreach program which is desperatly needed and would benefit all New Yorkers affected by this costly and debilitating disease as well as help those New Yorkers who are suffering but due to lack of awareness do not yet know they have lupus. It would be wonderful if Senator/..Assembly member (XX) would support these bills. Thank you very much. Be sure to give your full name and address to prove you are a constituent.
Sample Script for letters

I am a voter in the Senators/..Assembly members district and live at _.._..______________ and I have a loved one that suffers from lupus ( or I suffer from lupus). I am writing to ask that Senator/..Assembly member________ please support S2847 (or A00284) which is now under consideration in the Ways and Means Committee (or Senate Finance Committee).
I have lived with lupus for (XX) years. It has affected me and my family in many ways_.._.._.._.._.._.._.._.._.._.._.._.._.._.._.._.._.._..______________.

This legislation supports a statewide education and outreach program that would benefit all New Yorkers, whether they are at risk for getting lupus, or already have lupus. This disease is really hard to live with. It is debilitating, and the costs of living with this disease are exuberant.

My family would greatly appreciate if Senator/..Assembly member (XX) would support this bill.
Thank you very much.

Please forward this email to all your friends and family in New York State and ask them to take a moment to call or write their legislators asking them to support these important lupus bills.
Keep your eyes open for more details from us on these bills and others that may be on their way through the NY State Legislature this year


Monday, August 18, 2008 

Read inspiring stories from those whose lives have been touched by lupus. You can also submit your own story.

http://www.lupusli.org/lupus_voices_personal_stories/

Monday, August 18, 2008 

Now you can help us raise funds without ever leaving your home or giving a donation of your own. Check it out and help us continue to assist those with lupus.

http://www.lupusli.org/donations_and_fundraising/easy_online_giving/

 

 

Monday, August 18, 2008 

Current mood:  breezy

So many of you asked for them, and not only do we have them back, but they have been updated as well.

Lupus Seals come on a sheet of 24 and are $1.50 per sheet (shipping and handling included). Each seal is approx the size of a quater. You can place the seals on your letters, bills and just in time for the holidays your greeting cards!

 

Visit our website at http://www.lupusli.org/2007/12/back_by_popular_demandlupus_se.phpmore to order.

Please state how many sheets you would like, your credit card number, expiration date, address and phone number, and we will send them out to you the next day. You can also order by the phone by calling 1-800-850-9000.

 

Monday, August 18, 2008 

Current mood:  breezy

Newly Discovered Gene Variant Implicated In Lupus - Cutting The Brakes On The Immune System

http://www.lupusli.org/2008/08/newly_discovered_gene_variant.phpmore

 

Epratuzumab Reduced Disease Activity And Steroid Use In Patients With Moderate And Severe Flaring SLE

http://www.lupusli.org/2008/06/epratuzumab_reduced_disease_ac.phpmore

 

Ovarian Function Preserved In Women With Severe Systemic Lupus Erythematosus When Treated With Cyclophosphamide And Mycophenolate Mofetil

http://www.lupusli.org/2008/06/ovarian_function_preserved_in.phpmore

 

Tuesday, March 11, 2008 

Lupus Education Days are held in our Bellmore, NY office four times a year. The next dates are:

Saturday, June 14
Saturday, September 6
Saturday, November 15

Each Education Day is from 9:30am-4:00pm and includes light breakfast, lunch and all educational materials.

Each Education Day is taught by someone with lupus. Questions are encouraged. Learn about medications, coping, dealing with your doctor, family etc.

For members of the Alliance the price is $10 per person, and for non-members it is $15. Anyone can attend! Please call 1-800-850-9000 to register.

 

Tuesday, March 11, 2008 

Current mood:  breezy

During the Week of March 3rd, The Lupus Alliance of LI/Q as part of the Lupus National Coalition went to Washington D.C. to speak with our local members of Congress about several issues important to those that have lupus as well as other autoimmune diseases.

During this trip our advocates were able to meet with Congresswoman Caroline McCarthy, Congressman Peter King, Congressman Steve Israel and the aides to several other Congresspeople including Gary Ackerman and Congressman Crowley.

The issues we brought to D.C. were three fold:

Support the 5 Year Lupus Research Plan by the NIH by seeking an update from the NIH Director on lupus-related research activitites at teh NIH. (for details on the NIH plan visit our website atwww.lupusliqueens.org)

Increase Biomedical Research Funding at NIH, urging congress to begin to restore the nations medical research enterprise and support a 6.6% or 1.9 BIllion, increase in funding for the NIH fiscal Year 2009. This increase would serve all diseases and research not just Lupus.

Reduce Health Disparities in Lupus, requesting that Congress provide the Department of HHS office of Minority Health with support in the Fiscal year 2009 Labor/HHS Appropriations Bill for new lupus educaiton efforts for health professionals. This money would help educate doctors on diagosing lupus earlier therefore, saving lives.

You can check out photos from this event in our pictures!

Tuesday, March 11, 2008 

On Saturday, June 28th, 2008 from 3:30-6:00pm, you can join Greg-T and Skate for Lupus.

Greg-T will be with us at USA Roller Skating Rink on Hicksville Rd in Seaford, to help raise money for our Let kids be kids program which offers help and fun to children and teens with lupus.

From financial programs to free and fun outings and trips this program helps kids and teens with lupus have fun, and bond with other kids who like themselves also live with lupus on a daily basis.

Tickets can be purchased at the door or through the Lupus office at 1-800-850-9000. Admission is $10 per skater, or $5 per non-skating chaperone/adult etc.

The event will include trivia games, a Live DJ and raffles including a raffle for a free birthday party at United Skates!

Please come join in the fun, Skate with Greg and help children and teens with lupus!
 

 

Tuesday, March 11, 2008 

Current mood:  luminous

On Sunday, April 27th, 2008 we will be holding our Lupus Gala Brunch. This event although a fundraiser, is also an opportunity to honor several of our loyal supporters and volunteers who have gone above and beyond the call for those with lupus.

This years honorees are:
Christine Donato of ButYouDontLookSick.com and the Miserandino Family.
Dr. Robert Phillips of the Center for Coping in Hicksville.
Greg-T and Z-100 Radio Station.
Richard Safrath Esq. and the McCarthy Foundation.

The event will include a Chinese Auction, gift bags for every attendee, and a performance by world renowned producer/artist Michael Castaldo, who is also donating several special prizes!

To find out more, or to purchase tickets you can call us at 1-800-850-9000 or e-mail us at:info@Lupusliqueens.org.

If you cannot attend, but you would like to help, or say thank you to this years honorees for all the work they have done on behalf of those with lupus, you can purchase a journal ad. PRices for these ads range from $25-$1000!