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Comment by Josh and Kiah on March 14, 2014 at 4:45pm

The survey results are in and we now have a firm date for the support group meeting. The details are below.

WHAT: Greater Milwaukee Alopecia Areata Network Support Group Meetings
WHEN: Thursday March 27, 6:30-8:30pm
WHERE: United Methodist Church, 2319 E. Kenwood Blvd, Milwaukee, 53211 (Right across from the UWM Student Union)
DETAILS: Signs inside will direct you to the gym where the meeting will be held. Parking is available in a small lot to the left of the building. Signs say that you can only park with a permit, but we have been approved to park there. Street parking, or paid parking in the student union is also available.

PLEASE CONFIRM IF YOU WILL BE ATTENDING. If possible, please bring a light refreshment, however it is by no means required. If you do plan on bringing something please let us know that as well so we can coordinate accordingly.

Comment by Josh and Kiah on March 5, 2014 at 6:02pm

Greetings All!!

I want to give everyone a final opportunity to vote on a date that works best for the support group meeting this month. We did not have votes for tomorrow, Thursday March 6, so that is off the table. If you havent voted yet and would like to attend please vote at the following link. The poll will be closed on Friday and we will let everyone know the set date.

Vote here:
https://www.surveymonkey.com/s/K2C82M7

Also, the National Alopecia Areata Foundation is looking for Legislative Liason's in Wisconsin to help communicate the needs of Alopecia families to our elected officials. This is a great way to get involved in a meaningful way and help work towards further research funding for viable treatments and a cure. It is critical to have people fill these roles if we hope to make major change in the way Alopecia Areata research is treated.  

I asked Gary Sherwood, NAAF's Director of Communications, for a more detailed description of the Legislative Liason Program and here was his response: 

"Advocacy has always been a component of NAAF’s mission and soon after I joined the Foundation in 2012, I created the Legislative Liaison Program for those in the alopecia areata community who are interested in forming relationships with their elected officials in Congress to further our cause.  
 
This year Legislative Liaisons will have meetings in April at their congressional representatives’ local (or district) offices, in which they will be encouraged to bring family, friends and support group members.  Additionally In September, Legislative Liaisons will once again be invited to take part in our Day on Capitol Hill in Washington, DC.  We will help the liaisons prep for the meetings with webinars and materials that include the topics we wish them to address.  Additionally, we have occasional Action Alerts with which we ask the liaisons to participate.  It usually requires sending an e-mail or making a phone call to your legislators."
  
If you are interested in finding out more or have any questions you can email me back or contact Gary Sherwood at Gary@naaf.org

Comment by Susan Innes on January 21, 2014 at 10:20pm

Hi Josh and Kiah, Congratulations on the successful September event. Really incredible to have raised that much money but you put forth a lot of effort to produce a successful fundraiser.

Was there a final date set for the support group meeting? If the weather were good, I'd like to try to make it on the 30th.

Comment by Josh and Kiah on January 10, 2014 at 5:52pm

Sorry about the backwards string but I had too much information to post at once!! Had to break it up. So please read the order they were posted! Thanks! Everyone!

Comment by Josh and Kiah on January 10, 2014 at 5:51pm

SUPPORT GROUP MEETING

Several people have contacted me with interest in holding another support group meeting. This is open to both individuals affected by alopecia, or those with loved ones who are affected. One of our members has offered up her gym near the UW-Milwaukee campus as a meeting space. We are looking to gather next Thursday Jan 16 from 6:30-8:30. However since it is such short notice, if there is enough feedback and interest we could push the meeting back to the 23rd or 30th. PLEASE LET ME KNOW WHAT WORKS FOR YOU SO WE CAN PLAN ACCORDINGLY. We will try to accommodate as many people as we can.

WHAT: Greater Milwaukee Alopecia Areata Network Support Group Meetings
WHEN: Thursday Jan. 16, 6:30-8:30pm
WHERE: United Methodist Church, 2319 E. Kenwood Blvd, Milwaukee, 53211 (Right across from the UWM Student Union)
DETAILS: Signs inside will direct you to the gym where the meeting will be held. Parking is available in a small lot to the left of the building. Signs say that you can only park with a permit, but we have been approved to park there. Street parking, or paid parking in the student union is also available. 

AGAIN>>> PLEASE CONFIRM IF YOU WILL BE ATTENDING. If possible, please bring a light refreshment, however it is by no means required.

Thank you all so much and I look forward to seeing you all again!

Comment by Josh and Kiah on January 10, 2014 at 5:51pm

NOTE: This year the Bucks have offered to let 25 children and young adults from our group participate in the "Halftime high-five tunnel" were they will go on the floor and high five the players as the come out from halftime. IF YOUR CHILD WOULD LIKE TO PARTICIPATE I WILL NEED TO KNOW THEIR NAME BY THE END OF NEXT WEEK. I have to pass the names along to the Bucks so they can print the passes. If you have additional children that would like to participate please let me know and I will try to accommodate. It will all depend on the number of people interested. 

I know this is short notice but please let me know asap if you will be attending so I can reserve your tickets. The game has a 7:00 tip off so we will need to meet at the Northwestern Mutual Gate (corner of 4th and State Street) no later than 5:30 p.m.

Comment by Josh and Kiah on January 10, 2014 at 5:50pm

MEET AND GREET WITH CHARLIE VILLANUEVA

The Milwaukee Bucks will again host a Meet and Greet with Charlie Villanueva. This year it will be held on Wed Jan 22 when the Detroit Pistons come to town. Today I learned that the Bucks will in fact be able to donate a limited number of tickets. Since tickets are limited, we will need to limit the free tickets to four tickets per family. However, additional tickets are available for purchase for any friends and family that would like to join. Please spread the word so that we have a great turnout for our group and can continue to raise Alopecia Areata awareness in our community. The Bucks have made two ticket options available (lower and upper level) at a discounted rate. The donated tickets are in section 207 if you would like to make sure you purchase additional tickets in the same section. When we arrive in the seats we will be sure to move around so that your entire group can sit next to each other. 

Use the following link to purchase tickets and enter 'NAAF' in for the special code.
http://tinyurl.com/buckspass
Promo Code: NAAF

Enter this code in the “Access an Offer” box at the top left of the page (directly underneath the red box labeled “View Tickets”) ORDERS MUST BE RECEIVED BY JANUARY 20TH

You can also follow our event page at: 
https://www.facebook.com/events/669760683065888/

For those of you not familiar with the meet and greet we need to arrive early and the team rep will escort our group courtside to watch Charlie and the Pistons warm up. After warm ups, Charlie will then come over for photos, autographs, etc.  Make sure to bring any memorabilia you would like Charlie to sign and your cameras! In my experience, only the kids/young adults with alopecia get to go on the floor and take group pictures with Charlie. I'm not positive but I just want to make everyone aware so any of your other children are not disappointed. We will also have a scoreboard awareness message. 

Comment by Josh and Kiah on January 10, 2014 at 5:49pm

Here is the email I shared with our local support group if anyone here is interested in joining us for two upcoming events. 

Greetings Families!! 

I hope everyone had a great holiday and your new year is off to a good start.  2013 saw the Greater Milwaukee Alopecia Areata Network grow substantially. Many new individuals and families reached out to contact us to find information and support, and to meet others who are going through the same thing we all are. As we know, this is a very difficult disease to deal with, particularly when first confronted with it. Together we can support one another and provide a loud voice for the local alopecia community. 

Our second annual Milwaukee Rock for Locks: Benefit for NAAF and Morgan's Ride for Alopecia held last September was a great success. Several of you joined us for either the beautiful motorcycle ride, or the great music, food, activities, and our now famous huge silent auction. Thanks to the untold hours put in by our legion of volunteers, generous support of our donors and sponsors , and the attendance of several hundred of our family members, friends and the general public, we were able to raise $17,121.93 for NAAF!!!! This makes our event one of the largest and most successful Alopecia Areata fundraisers in the ENTIRE COUNTRY!! This money will be used to support NAAF's continuing mission to raise awareness, support those impacted by alopecia, help send local children to the national conference, and push for research that will lead to viable treatments, and eventually a cure. If you haven't made it to Rock for Locks yet, I implore you to mark your calenders for Saturday Sept. 6 and join us next year at Milwaukee Harley-Davidison! If you are interested in volunteering next year or have ideas for donors or sponsors please contact me. We are already starting preparations! 

We are hitting the ground running in 2014 and will be holding two great events to kick off the year. 

Comment by Jenny on December 26, 2013 at 8:49pm

Hello everyone! I have a son who is 9 and has Alopecia. Just looking to see if their are any other kids near the Green Bay Area?

Comment by laura myers on December 11, 2013 at 11:56am

Thank you so much for the offer! I will discuss it with my family and see if it's something we would like to do! It is a bit of a drive, so it would depend on weather too. But I will definately talk it over!

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