Thursday, September 22, 2011

Thursday, September 22, 2011

Tonight's picture was taken in September of 2008 in the Lombardi Clinic at the Hospital. As you can see Mattie discovered another medium there which he liked working with.... clay! In this picture Mattie was building a clay boat, with stick people included. Boats were fascinating to Mattie and if you asked him during the beginning portion of his treatment what he was saving his money for in his piggy bank, his answer would be to buy a boat. NOT a toy boat, but a real boat! Mattie wanted to be a captain of a boat someday, and I do believe if he lived and was healthy, he would have found a way for his dream to come true. One thing was for certain about Mattie, when he was motivated, he found a way to make things happen.

Childhood Cancer Facts of the Day: 15 times more children are diagnosed with cancer than with pediatric AIDS, but U.S. invests 30 times more research funds for pediatric AIDS ($600,000) than for childhood cancer ($20,000) (American Cancer Society).

As I promise, I wanted to share some exciting news with you. Thanks to our connections with the Children's Cause for Cancer Advocacy (CCCA) organization and our wonderful lobbying team at Mercury, LLC, Mattie Miracle was able to insert some psychosocial language into the re-introduced survivorship bill. This is wonderful news for both CCCA and Mattie Miracle, but mostly for children and their families battling cancer. This evening, our board member Tamra, represented Peter and I at a reception on Capitol Hill. At the reception, Tamra told me Mattie Miracle was acknowledged for our participation in the creation of this bill. Below you will see a picture of Tamra with Rep. Jackie Speier (D-CA) and find more information about the bill which was introduced by Rep. Speier today.

Speier Reintroduces Legislation to Improve Treatment of Childhood Cancer Survivors 

Today, Representative Jackie Speier (D-CA) will introduce the bipartisan Pediatric, Adolescent, and Young Adult Cancer Survivorship Research and Quality of Life Act of 2011, with Representative Michael McCaul (R-TX) as the lead Republican sponsor. The bill includes the creation of a Workforce Collaborative on Medical and Psychosocial Care for Childhood Cancer Survivors, which would convene a cross-specialty, multidisciplinary group of educators, consumer and family advocates and providers of psychosocial and biomedical health services. This is a significant win as it continues to shine a light on psychosocial education and treatment and begins to make a real difference for children and their families. In addition, the legislation authorizes $10 million a year for grants to entities to establish and operate clinics for “comprehensive long-term follow-up services” for pediatric cancer survivors. Mattie Miracle Cancer Foundation successfully inserted language into the bill to make entities integrating medical and psychosocial services eligible for these grants. Mattie Miracle worked closely with Children’s Cause for Cancer Advocacy and Rep. Speier’s staff on the final language of the bill. To read more about this bill, click below:

http://speier.house.gov/index.php?option=com_content&view=article&id=470:speier-reintroduces-legislation-to-improve-treatment-of-childhood-cancer-survivors&catid=1:press-releases&Itemid=14

My parents and I had the wonderful opportunity to visit the second Getty Museum in Los Angeles. This museum is known as the Getty Villa and is located in Malibu, with views of the Pacific Ocean. When I lived in California, I had many opportunities to visit this incredible museum. I always felt as if stepping onto this property, was like taking a journey back in time to Italy. However, the museum closed for many years for renovations, and just recently opened back up. It took me a while to appreciate the new and improved space. I loved how in the past it was cozy, smaller, and intimate. It felt as if we were entering someone's home. With the renovation, the villa was created to be grand and recreate what a roman villa looked like in the 1700s. However, in true Getty fashion, this museum is FREE to the public, and just like the Getty Center (which I visited on Tuesday), the use of outdoor space and water are memorable and extremely peaceful. Visiting a Getty museum is not only like taking a step back in time, but it is almost a spiritual experience. He provided the space to unwind and simply soak in beauty without feeling rushed, hurried, or frenzied.

Getty felt that art had to be shared and when you visit one of his museums, you have to admire his generosity. It is a sad commentary that Getty never saw his finished creation, the villa. It was built in 1974, however, Getty was living in London at the time, and was deathly afraid of air travel by that point (a man I can relate to!). So despite funding this villa and being instrumental in its creation, he never got to see this beautiful structure for himself. Do note however, that he chose to be buried on the museum's campus.

The Getty Villa is modeled after a first-century Roman country house, the Villa dei Papiri in Herculaneum, Italy. The J. Paul Getty Museum building was constructed in the early 1970s by the architectural firm of Langdon and Wilson. Architectural consultant Norman Neuerburg worked closely with J. Paul Getty to develop the interior and exterior details (Getty paid for the architect to fly back and forth from LA to London, since Getty wouldn't fly to LA).The Villa dei Papiri was buried by the eruption of Mt. Vesuvius in A.D. 79, and much of it remains unexcavated. Therefore, Neuerburg based many of the Museum's architectural and landscaping details on elements from other ancient Roman houses in the towns of Pompeii, Herculaneum, and Stabiae—from bronze lanterns like those carried along the streets of Pompeii to herbs and shrubs grown by the Romans for food and ceremony. Boston-based architects Rodolfo Machado and Jorge Silvetti began renovating the Getty Villa site in 1997.

It was fascinating to see all these staircases at the museum. In fact, you had to take steps down to enter the villa. Why? Because these clever architects wanted the public to feel as if we were entering an archaeological dig. Just like the way the actual Villa Papiri was discovered. If you look at the steps, notice the backdrop. The walls are striated and have various textures, to mimic the type of sediment one would see while digging out layer after layer of earth to uncover the buried villa. To me this recreation was SO effective! So as you enter this museum, you immediately feel you are walking back in time, through something that has been excavated for our pleasure.

When you enter the museum, you are in the atrium. The atrium was the main public room in a roman house. The ceiling compluvium, open to light and air, allowed rainwater to fall into the impluvium (pool in the center of the room) where it was channeled to an underground cistern. In the atrium business took place, greeting of guests occurred here, and in addition, god like statues were placed around the room for family members to worship them in this space.

The gardens at the museum are spectacular. They are designed to bring about rest and relaxation. Within these spaces NO work was conducted. This space is entitled....the Outer Peristyle.The Museum's south doors open onto the Outer Peristyle, the largest garden at the Getty Villa. It is adorned with hedge-lined pathways and circular stone benches. Plants favored by the ancient Romans, such as bay laurel, boxwood, myrtle, ivy, and oleander, are planted around a spectacular 220-foot-long reflecting pool (in the real villa this pool was six feet deep, here it is 18 inches deep). Bronze sculptures, replicas of statues found at the Villa dei Papiri, are placed in their ancient findspots. A peristyle, or covered walkway, surrounds the formal garden and leads visitors past illusionistic wall paintings to spectacular views of the Pacific Ocean.

Herb Garden Outside the Museum entrance lies the Herb Garden, a mosaic of fruit trees (plum, fig, pomegrante, lemon, apricot, peach, etc) and fragrant and colorful annuals and perennials used by the ancient Romans in cooking, ceremony, and medicine. East GardenBeyond the East stair in the Museum lies the East Garden, one of the most tranquil spaces at the Villa. This walled sanctuary is shaded by sycamore and laurel trees and animated by splashing water from two sculptural fountains. Theatrical masks adorn the mosaic-and-shell fountain on the east wall, while sculpted bronze civet heads spout playful streams from the fountain at the center of the space. We saw several exhibits. This one intrigued me. It was entitled, Molten Color: Glassmaking in Antiquity. I am a glass collector, so learning about the glass making process and seeing these ancient works were extraordinary. Over 180 ancient glass objects from the collection of Erwin Oppenländer are featured in this exhibition.The Oppenländer collection, which the Getty acquired in 2003, is remarkable for its cultural and chronological breadth. It includes works made in Mesopotamia, Egypt, the Greek world, and the Roman Empire, and spans the entire period of ancient glass production, from its origins in Mesopotamia in about 2500 B.C. to Byzantine and Islamic glass of the eleventh century A.D. Also notable in the Oppenländer collection is the variety of ancient glassmaking techniques, such as casting, core forming, mosaic, inflation, mold blowing, cameo carving, incising, and cutting. All these techniques are still used by glass artists today. After our trip to the museum, we had lunch along the water at a restaurant I visited many times when I was in high school. It is a Malibu institution called Gladstones. Here was my view while having lunch. I am a water and beach person and I find it very therapeutic. Today we were visited by pelicans (flying above in the picture), seagulls, piping plovers (another favorite of mine), and cormorants. At lunch we couldn't finish what we were eating. So I asked the waiter to give me a box to put it in. Instead of a box, he came with foil, and began creating a whale with mermaid on it right before my eyes!