Team Adalia T-Shirts Now Online

If you would like a way to support our mission to tell the world about our little Adalia Rose, and also give a little donation to a great cause, then we have just the thing! Now available, purchase a Team Adalia T-Shirt!

You can order the shirts at Adalia’s official site, adaliarose.com. T-shirts are $20, and for every shirt that is purchased, we will donate $5 to the Progeria Research Foundation. The shirts come in two colors, black for men and purple for women, and feature the team Adalia logo along with a picture of our beautiful Adalia Rose.

For those who don’t know about Team Adalia, we are a group of Adalia supporters who help her Mom, Natalia, with a lot of the online responsibilities that come with having a large fan base. We help Natalia so that she can focus on what’s most important, spending time taking care of Adalia.

The idea for the t-shirts came from talking directly with Adalia’s fans. It was never our intention to promote Team Adalia, so please remember, this is in support of Adalia herself and any child suffering from Progeria.

Thank you so much for showing your support!

Adalia & Me on KVUE News in Austin Promoting Friday’s Art Event

Earlier this week, Yvonne Nava of KVUE News in Austin interviewed Adalia and me about the art show and auction happening tomorrow night to benefit the Progeria Research Foundation. If you haven’t seen the interview, we’ve posted it on Adalia’s Facebook page. I’m not going to lie, the experience was fun for both Adalia and me … but I was super nervous!

Adalia, on the other hand, was right in her element; she is such a character, I just don’t know where she gets this stuff! She charmed the folks at KVUE so much that they gave her a special gift at the end of the interview – a tiara and a wand! Big thanks to Yvonne Nava and everyone at KVUE for a wonderful experience!

Of course, we didn’t just appear on TV to see which one of us looks better – definitely Adalia by the way. We were promoting the upcoming art show and auction organized by our good friends at Xibit Productions here in Austin, Texas. All proceeds from the art auction will go to the Progeria Research Foundation. If you haven’t heard of the great work that PRF does, I beg you to go to their website and become acquainted. They are making great strides in finding a cure for not just Progeria, but maybe aging in general.

The art auction will be silent, so there won’t be any rambling auctioneers to talk over! Instead, each of the independent artists will set a starting price for their work (to recoup the costs of framing and matting their work), and anything bid over the starting price, as well as the money for admission, will go directly to Progeria Research. In some cases, the art may start at a $0 starting price. There will also be food, fashion, music, beverages, photography, great people and even Adalia at the event!

Please come and show your support for local artists, as much as the children suffering from Progeria. The event is this Friday from 6:30 – 10 p.m. at UP Collective. More details are available on this blog and Adalia’s Facebook page. Bidding will close at 9 p.m., so get there early!

Looking forward to seeing everyone tomorrow night!

Abstract Austin: Photography Show & Silent Auction for Adalia Rose

November 2nd @ UP Collective   {2326 Cesar Chavez, ATX, 78702}

Facebook Event Page

Abstract Austin Event Website

Adalia Rose’s Facebook Page

Progeria Research Foundation

TICKETS & DONATIONS TO PRF

Join us for a fun evening of art, food, music and fashion in celebration of Adalia Rose, a little girl from Austin, Texas who is living with Progeria. Admission is $15 at the door, and 100% of the proceeds will go to the Progeria Research Foundation at the request of Adalia’s family.

In addition, we will hold a Silent Auction for the artwork on display, and net sales will go to the Progeria Research Foundation as well.

Join us for the party! We’ll have music by DJ Hexum, complimentary food & drinks, and beautiful abstract photography on display and for sale. Local Austin designer Rare Trends, styled by Edith Henry, will have models showing off the latest fashions. Quite fitting, the motto of Rare Trends is “Wear Art.”

We hope to see everyone local to the ATX area come out for this amazing little girl and important cause.

To purchase your tickets – or make a donation directly to The Progeria Research Foundation – follow this LINK.

Your support for The Progeria Research Foundation is vital. History has been made, with every child in the first-ever Progeria clinical drug trial showing improvement in one or more areas of their condition, proving that the FTI Drug is the first known, effective treatment for children with Progeria. However, this is just a treatment, not a cure. PRF uses the knowledge gained from these trials to push their research forward. With their proven, fast-paced record of success, combined with your support, we can help children with Progeria lead longer, healthier lives. Together We WILL Find The Cure!

NOTE:  We are looking for a couple more photography artists to add to our line-up. The theme of this event is Abstract Photography, and this event is for a great cause. So, if you want to get your abstract photography seen while also helping a great little girl like Adalia Rose … AND score some publicity for your work, contact us today!  In addition, we are looking for one or two more food and drink sponsors. Email Rebecca@speaksocial.net for details.

NPR Release New Info on Potential Progeria Cure

FANTASTIC NEWS!

I came across this article the other day on NPR, and, I must say, my heart was racing with excitement on every word. The article is about a new drug called Lonafarnib that could be the first step in finding a cure for Progeria.

I won’t say too much because I want everyone to read the article HERE.

The medical world seems to be making great strides toward finding a cure for Progeria, and to think that just 10 years ago doctors were still wondering what this disease even was! This is wonderful news, not only for my sweet Adalia, but for all children affected by this terrible disease.  Much Love Everyone!

Experimental Cure for Progeria Teaches Us About Aging in General

Describing what life is like for Adalia is not an easy task. Progeria is a complex disease that involves more scientific and medical jargon than I have the ability to communicate to you – and writing about its potential cure will be just as difficult.

A few months ago I was on the Progeria Research Foundation’s website and saw a video of a TEDMED presentation by Doctor Francis Collins. He spoke about his journey to find cures for the over 4,000 diseases known to man, and, in particular, about the potential cure for Progeria. He also introduced a young man who has Progeria named Sam Berns. Sam spoke candidly about his battle with the aging disease; being involved in research and studies; how the disease has affected his life; and how he has, in many ways, already beaten it. If you have the time, I highly suggest that you watch it.

Dr. Collins, a geneticist and Director of the National Institute of Health, led an important study that could be the breakthrough we pray for – finding a potential cure.

As mentioned in one of my previous blogs, Progeria is caused by a particular cell that is a little different than it should be, mutated is how it was explained to me. What Collins discovered in his study is that, when you administer a cancer drug called Tipifarnib, these different cells become normal. The microscopic structure, that separates those with Progeria and those without Progeria, is no longer distinguishable.

They are currently performing the study on mice, which, when administered the drug, have been cured of cardiovascular disease. Though this study has not been proven to work on humans, it has shown promise.

Also interesting is the fact that this drug might be used to cure cardiovascular disease in adults as well. In fact, there is widespread belief that a cure for Progeria could mean a potential cure for aging. So, not only could doctors prevent those with Progeria from dying, but from dying for centuries.

What’s most important is the comfort knowing that doctors, scientists, and researchers are working around the clock to find cures for all of these diseases that affect so many people, young and old. It’s not just Adalia. Everyone is, in some way, shape, or form affected by these diseases.

I also wanted to say that the Progeria Research Foundation has played a key role in the progress towards understanding Progeria, and finding its cure. It is a terrific foundation that has accomplished so much in its 14 years of existence.

It’s exciting and promising to know that, through research and studies, they have made significant ground towards finding a cure for Progeria. So much so, that I feel confident they are knocking on the door of ridding the world of this terribly painful disease.

The Day My Heart Shattered to Pieces

First of all, I can’t stress enough that my intentions for going online was simply to goof around with Adalia, and do something she wanted to do. You see, it’s hard for us to go outside like a normal family. Not only does it take a tank of sunscreen to properly protect Adalia, but  our neighborhood isn’t exactly Pleasantville, it you get what I’m saying.

So playing around on the internet was something that we could do safely, or so I thought. I never imagined that we would get so much attention. That’s why I think it’s so important for me to let everyone know (because you seem to like hearing from us) about Adalia’s reality, and what it is like to watch your child suffer with this very difficult disease.  

How I found out that Adalia had Progeria

When Adalia was born we didn’t see anything different in her other than some strange skin thickness on her torso … my mother told me she was OK, that it would go away … my mom tells me that about everything!

Two months went by, and we started noticing that she wasn’t gaining any weight. The doctors became worried, and so was I. We had no idea what was the problem, and the doctors told me to go to a geneticist. Being a first-time mother, I didn’t know what that was (and telling you this story brings back all of those same feelings). We went to the doctor where they ran blood tests.

She was about 3-4 months old now. The doctor took a look at her, and gave me some names of things that could be wrong with her – one of them being Progeria. At that moment, my heart broke. I didn’t know what any of it meant, all I knew was that something was different about Adalia.

I rushed to the library because at the time I was only 18, and I didn’t have a car or a cell phone. When I got to the library I researched Progeria, and two other disorders. The symptoms I read about for Progeria were: diminished body fat and muscle; hardening and tightening of the skin on the trunk and extremities; as well as hair loss.

Everything that I read was true about my baby, and that is a feeling that will make you feel like you could throw-up your heart. I was so hurt, so scared, and I didn’t know why this was happening.

All I knew at the time was that my baby was different, but she couldn’t be like these kids. I was terrified, and I didn’t know what to do. When the doctor finally called me, and announced that she had the results, I went to the office alone, and received the news that would change my life. My baby had Progeria.

I did a lot of crying, and a lot of questioning. I was in denial for a long time. Then, as time went on, I noticed that the doctors were right. She started changing, losing her hair, losing weight. Her joints started to stiffen, and the worst part, she was aging. I kept Adalia away from people for as long as I could because when I would go out, people would just stare. I even had people from high school talking about how ugly my baby was.

My heart was shattered into so many pieces, and I just wanted to be alone with my daughter. I secluded myself from everyone … even at times from my own family. Even though I lived  at  home, I never really associated with anyone. I felt much more comfortable being in my room, playing and listening to music with my baby girl.